My right hand. . . Now what?

It has been a while since I have written anything that actually was about NA, the subject of the blog. As it turns out, I have been preoccupied by other matters.

Remember that my right hand had been the site of my original attack of NA? Today, when I woke up, I began to notice that my right thumb and index fingers were tingling a bit. This increased through the day, and has been going on for around eight hours now. It increases when I stretch my arm out away from me. This is from the lower part of my hand, radiating out through all but the little finger. It has now been just under ten years since my first incident with my thumb and index fingers of my right hand. And my hand has been pretty much a quiet and a non issue for at least 5-6 years.

What does this mean? Hey, even though I got lucky with the diagnosis for my shoulder, I have no clue about this. Doctors I have seen pretty much implied that any tingling like this would happen only early on in the injury, and then it would eventually stop. And, they did not seem to be suggesting that the tingling was a good thing. What do I know? Not much. All I know is that the last time I felt this much activity in my hand was right before I became able to move my index finger again. And one more thing; I have routinely stretched my right arm out in the way I am now doing that cases the tingling to increase, and there was nothing. Tomorrow, maybe there will be nothing again. But for now, I know something is going on that has not happened for a long time.

To spill, or not to spill

I had known I had a tremor before but I did not choose to do anything about it until it started to impact me in a way that others would notice. I guess some might have noticed me before this, but I could still believe that they would not be sure they had really seen what I could feel happening. It all started at Starbucks.

“Do you want room for cream in that?”

Of course not; if they leave room for cream, they are cheating you out of coffee you have paid for. Anyway, if you ask for room for cream they always leave too much room for me. I just like a splash of it for flavor. And nine times out of ten, they still leave enough room for cream even when you say not to. That tenth time in this case, is the one that got me.

My barista (it is hard to think of them as baristas when they are filling a paper cup with coffee from Starbucks) filled my cup, and snapped the “to-go” lid on. I took it over to the sugar and cream station and removed the lid. My coffee about spilled over even sitting on the table there, it was so full. I thought to myself, ‘I will just pick this up real quick and drink it down a gulp or two so I can put some half-and-half in.’ And there would have been a time in my past that this would have been the thing to do. But, now was not that time.

I had raised the cup up halfway and it was already about out of my control. I stared at my hand willing it to be still, knowing it would not, but still unable to continue raising it, or lowering it back to the table. The shake got worse. It is funny that I should have known this would happen with a paper cup. It always does to some extent. If it had been a porcelain mug, the extra weight would have made it a steadier task. But these paper cups are just the right weight to set up a tremor, and I knew that. Why didn’t I think to steady my right hand with the left? It is a strange thing that putting two shaky hands together for me anyway, still works to steady things down a bit. But, how would that look? In some ways, using my left hand as a stabilizer would have been admitting that I had a problem. Yes, it would be much better to just stand there with cup half way to my mouth. By then, it was too late to do anything anyway. The coffee was splattering over my hand by then.
My first thought was that this stuff was way too hot to have tried to sip down to a more manageable level anyway. It was better to burn my hand a bit than to have to nurse a burned tongue for a few days. And it had the same effect as having drunk the coffee to a manageable level in the cup.

Now the worry was how many people witnessed my accidental spill? Where did Starbucks put the napkins again? It always seems like they hide them. OK, just sop up the spill, and move on. Of course I am shaking even more now with the added stress. People are around me waiting for me to move out of their way. No one wants to rush the poor old shaking man who just spilled coffee on his hand.

I have tried to be better about these types of events since then. Of course, now I am on Propranolol so that limits my shake to a degree. And, I am trying to be less caring about what others may see when they look at me. Maybe they understand. Maybe they do not. Maybe they have something they are sensitive about also, and they are not even looking at me lest I notice what they are attempting to hide. Maybe next time they ask me if they should leave room for cream, I will just say, “yes- leave a bit of room.”

I am cured. . . not

That is right. I saw my new Neurologist yesterday and today I am healthy. It is funny; I do not feel particularly different. I think that is because he chose to ignore certain things I said and focus on his machines that all predictably functioned flawlessly and told him that I had no neuromuscular problems. Everything is just fine here. No reason to ever come back to see this one. I am done.

So, what happened about the lower than normal CK blood test results? It all depends on who defines what is normal I guess. The lab that actually did the test flagged the results as lower than normal. My doctor did not even say that result was there. If I had not gone in and gotten my own copy of the results, I would never have known it existed. He would have been content to not even discuss that. But, according to him, he was only interested in that count if it was elevated. That is why he glossed over it.

What about my weakness you ask? Well, so did I. He suggested my weakness is only in my arms and it is due to my NA only. What about the crash in muscle function? It is of course because being out of shape as I am, I over did my recovery and potentially blew out the axons connected to the nerves that had regenerated to carry on new muscle return in my arms.

Well, that may fit for the arms. But it says nothing about weakness in my lower abdomen or legs. Well, if I am weak there, it is because I am out of shape, he suggests. There is no neuromuscular issue in my legs or feet. But, he did not test in my upper thigh which is the area I pointed out feels odd. And he did not test in my stomach area which is where I pointed out felt weak. When I told him I had done 10 sit ups and could not do even one ten minutes later, he suggested that I had used my weak arms to aid in the sit ups, and that was why I had trouble doing them.

Why do doctors always know you better than you know yourself?

Jury is still out

I do not have any official answer yet, but a new result is here. I seem to have a lower than normal total CK reading. That is a test of Creatine Kinase levels. Lower than normal readings could point to either late stage Muscular Dystrophy (levels are usually higher than normal in earlier stages and decrease as muscle mass decreases), or Myasthenia Gravis. Since I already reported I have certain signs of MG, I tend to think that might be the case. But again, just because I have beat my doctors to what turned out to be a correct diagnosis in the past (my diagnosis of NA)it doesn't mean I am right this time.

Finally relief for the tremors and twitches

For more information on Essential Tremor, see http://www.essentialtremorinfo.com/

For those who have been on this journey with me, I finally have some relief from the twitches and tremors that have cropped up since my NA started. I am not 100% sure that they are related to the NA, but it is a fact I did not have this before and have had it since the NA started.

Essential Tremor in itself is not life threatening, but it may depend on the cause just how much of a problem it becomes for you. It can be benign but it may also be related to things you do not want to ignore. I have never ignored mine. I have even pointed it out to doctors along the way. Most of them have noted officially in their reports that “no tremor was noted”. These guys were taking the easy way out, or they were blind, stupid or both.

Basically, this tremor is caused by some sort of underlying neuropathy that makes sets of opposing muscles start to work against each other. Normally these muscles would be able to balance the load. With essential tremor, one set gets weak in relation to the other. The muscles fight each other instead of working together. The result of that struggle is seen as tremor. The twitches may be related in a way I do not understand.

Is this a part of NA? I do not know. My Neurologist suggests that the tremor differs from NA in that NA is a peripheral in nature, and essential tremor is central. All I can say right now is that my Neurologist is not speculating as to a cause until he sees test results. Yep. I had to have another blood draw. That is three in the last 3-4 months. He did put me on Beta-blockers though so I can get some relief from the constant twitches and tremor. These have gotten worse of late. But, I have been living with them, and while I have been OK for the most part, I really notice, now that they are starting to go away- just how bad they had become. I am much better now after just a couple of days. My body feels more balanced. It is calmer than I have felt in years. When I sleep, I really sleep. It is amazing to realize just how much of a disruption to my sleep that these twitches had become. And for the first time is ages, I can hold a cup of coffee without steadying it with my other hand. I just feel that I have gotten more in control of my everyday life.

What now? I am still waiting. I know that there is no current cause in my brain- or it has not shown up yet anyway. So my life is still up in the air as far as a cause for any of this. But at least I feel more of the finer things (related to fine motor control) of my life are improving. I will spill less coffee as I wait for more information.

Short update

Pushups are now back to 18, and a struggle.

Brain MRI is negative as far as any pathology goes. So I have a large healthy brain.

New Neurologist is very interested in my tremor and the family history. He gave me a prescription (beta-blocker) to help control the tremor and wants to do the EMG still. He is very thorough and no doubt that he will do a better one than any previous attempts. Oh, and he wanted to do his own blood test.

Other than that, I am hanging in there. It is a relief to find out that I do not have anything tumor-like in my brain.

This could get complicated. . .

I went to my primary doctor last week or so, and told him about the tremor and rapid eye movement and other things that may not end up being related to HNA, since he really can’t talk about that in particular. I demonstrated the tremor, and told of the muscle strength fluctuation. I mentioned my guess at Myasthenia Gravis as being a possible cause. By now he is not surprised by my suggestions anymore. He thought it might be possible, but that the specific type of rapid eye movement may suggest something else too. He did not want to speculate. Instead he ordered a bunch of blood tests, an EMG test, and a brain MRI.

What I find that may be related is called Meniere's Disease, which can cause rapid eye movement, vertigo and balance problems. It can also cause tinnitus of at least one ear. I can see why he did not want to speculate. As much complaining as I have done previously about the ability of doctors to know what I have- there are so many things out there that I am surprised anyone ever really knows what may be going on in their body.

I have had at least one attack of vertigo, one attack of rapid eye movement and I have slight tinnitus in my left ear. I sometimes feel as if my balance is off a bit. Who knows at this point if any of this is related?

He mentioned one thing to me during my visit that could pertain to anyone trying to figure out what is happening to them. He suggested that my increased level of focus on any new symptom may or may not really be helping. As Freud eventually said about dream imagery, sometimes a cigar is just a cigar. Maybe in my case, all of these other things are just random passing things, and not related to any long term issues. Due to my increased sensitivity of focus, I am concentrating on things that may not really be there- or my focus is making them appear to be more than they are.

One note though, I do know that I have a brain. The MRI at least proved that. My parents would be happy to finally know that. There was a brief time when I was younger that I would have liked to have this proof. For a time they wondered if I really had a brain in my head. . . And according to the MRI Technician it was the largest one they had seen that day. I do have a rather large head. It is nice to know it is not empty.

Myasthenia Gravis- another possiblity

I have been accepting of my diagnosis of Neuralgic Amyotrophy in the past. Of course I have kept looking just in case something else popped up of interest that may be a closer match. I may have found that. Myasthenia Gravis (MG) is an autoimmune disease (what isn’t an autoimmune disease anymore?) that explains quite a few of my current symptoms, including the weakness in my eyes and my fluctuating muscle strength. If you search “fluctuating muscle function” you will only come up with the one disease; Myasthenia Gravis.

From Wikipedia http://en.wikipedia.org/wiki/Myasthenia_gravis Myasthenia Gravis “is a neuromuscular disease leading to fluctuating muscle weakness and fatigability. It is an autoimmune disorder, in which weakness is caused by circulating antibodies that block acetylcholine receptors at the post-synaptic neuromuscular junction,[1] inhibiting the simulative effect of the neurotransmitter acetylcholine. Myasthenia is treated medically with cholinesterase inhibitors or immunosuppressants, and, in selected cases, thymectomy. At 200–400 cases per million it is one of the less common autoimmune disorders.”

They go on to say that it can be difficult to diagnose due to subtle differences in presentation of symptoms and similarities to other diseases, and that it tends to run in families that have other autoimmune diseases.

One thing that always perplexed me about my condition was that it seemed that my eye problems started about the same time as my most recent attack. MG would explain that. It can cause double vision and blurriness of vision. I had this very suddenly only a few months after my eyes had been checked and were said to be OK. I am not sure I had mentioned that before all this started, I also had an episode of rapid eye movement (while totally awake). And MG would also explain the intermittent return to strength followed by weakness again after intense exercise, as mentioned earlier when I quickly worked up to 25 pushups done twice in one day, followed by a collapse of strength the next day, and for a few weeks after. By the way, I am now up to 16 pushups. As much as my muscles were shaking when I tried last week to get to 14, I have been able to do 16 once since then.

So, this is something else to consider. I know that there were a few of you out there who had issues with your eyes as I have also had. I am going to ask my Doctor if MG could be the underlying cause of my problems. Of course, nothing says I could not have NA and MG. I may have to start another blog yet.

For more Myasthenia Gravis information, see this site:

http://www.ninds.nih.gov/disorders/myasthenia_gravis/detail_myasthenia_gravis.htm

They point out the common symptoms listed here from the site:

"In most cases, the first noticeable symptom is weakness of the eye muscles. In others, difficulty in swallowing and slurred speech may be the first signs. The degree of muscle weakness involved in myasthenia gravis varies greatly among patients, ranging from a localized form, limited to eye muscles (ocular myasthenia), to a severe or generalized form in which many muscles - sometimes including those that control breathing - are affected. Symptoms, which vary in type and severity, may include a drooping of one or both eyelids (ptosis), blurred or double vision (diplopia) due to weakness of the muscles that control eye movements, unstable or waddling gait, weakness in arms, hands, fingers, legs, and neck, a change in facial expression, difficulty in swallowing and shortness of breath, and impaired speech (dysarthria)."

Push-ups near topping out at 14

I thought it might be time for a push-up update. I am now up to 14, but I think it might be near a topping off for now anyway. I know I can do more- as I have stated elsewhere I can do 25 twice in a day under the right circumstance. It just feels like my strength does not want to increase like that again. Of course, being able to do 25 twice in a day seemed like it might be a fluke at the time, and it turned out to really be a fluke.

What happens now as I try to push towards 14 is that the rest of my body starts to protest. Everything else starts to shake under the stress starting on number 10 or so, and it is all I can do to keep going. It is hard to think I can get higher than 14 unless the rest of my strength can improve a bit, and I am not sure it will yet.

Other strength issues have surfaced since I switched to heavier bedding for winter. It usually has taken only a day or so to adjust to the heavier blankets at this time of year even since the 2006 attack. This time though, it continues to be a struggle to turn over a couple of weeks after the switch. Something may eventually have to give here. Either I will live with it, or have to go to different blankets. Or, I guess my strength may still recover a bit. I still hope for that, and I try to work towards it, but at this point I have to say I wonder how much I will get back when it still feels like certain muscles are getting weaker instead of recovering.

29 gifts in 29 days

I normally would not suggest something like this link unless I had read at least some of the book that the person has written. But, I liked the points she brought up earlier on the Today Show. Here is that link

(http://today.msnbc.msn.com/id/26184891/vp/33478623#33478623)

In a nutshell, Cami Walker is a young woman who was diagnosed with MS shortly after getting married. Her disease symptoms progressed quickly. She was losing her eye site, had problems walking, and was in such pain she was having problems with the basics of her life. Her Spiritual Advisor and friend told her to stop focusing on the disease and start giving to others. See more here:

http://www.29gifts.org/

According to her, when she did this, her symptoms improved. In the Today Show interview she says that there was a point that she walked away from her cane and did not even notice until later in the day. MRIs now show that the progression of her MS has stopped.

Now, I am not suggesting that I completely buy into the claims, but I am open to them. I know negativity can make things worse. It would seem that doing a small act of kindness could make things better. I do know that even though I do not have MS (at least not to my knowledge) that I have to keep reminding myself that it is harmful to identify myself with any sort of disease symptoms I may have. Too much negative focus on this sort of disease can only make it worse. Maybe she has the right idea.

You are not the disease. The disease is not you.

Keep those joints moving!!!

Hello Blog People- You know who you are.

It has been a while since I have written anything substantial. A week or so ago I woke up in the middle of the night and wrote an entry in my head as I lay there trying to fall back asleep. It still has not been written, but it would deal with the importance of KEEPING YOUR IMPACTED JOINTS MOVING.

(DISCLAIMER- I am not a Doctor or a Physical Therapist- Do any exercise program not prescribed by them at your own risk-)

Movement is essential to regaining any of your strength. What good would it be to get back strength if you could not move the joint? Start passive movement of the joint as soon as you can do so without pain. Your Physical Therapist can give you exercises to help. But remember that PTs are just there to remind you of what you should already know about your body. If you do not use it, you will lose it. In order to use it, it has to be able to move. Strength will follow.

A good and easy passive arm motion exercise is to just bend at the waste, and let the impacted arm hang lose towards the floor. Gently swing it using movement of your upper body. Swing it back and forth, or in a circular motion. Maybe go one way for a few turns, and stop and reverse. Do not use your arm muscles in any way to do this. That is the passive part.

Another passive exercise you may be able to do yourself if your good arm is good enough to lift your impacted arm through its range of motion. Or, you can enlist the aid of someone you trust. I say that tongue in cheek a bit, but trust is important in dealing with allowing someone to lift your arm for you and move it through range of motion you may not have. You have to be aware of when and if it is uncomfortable for you, and they have to be aware that you may not react in time to stop them before you reach that point. It is best to do this after being shown by a Physical Therapist, but if you do not live with one, you may have to improvise.

You can also do arm movement on your back on a bed. At that time, your scapula is fairly well supported, and may actually be in its normal position. When I tried to do range of motion on my back in this way, I was pleased to discover I could do a lot more movement than I thought I could do. But still be careful.

Regular readers know that I have used push-ups as a gage of my strength being there, or not. This is not something you should just start out doing on your own, or at least, not full push-ups. My PT suggested to me that I start with scapular push-ups. For these, you get in the standard position, but instead of lowering yourself to the floor, you attempt to just flex and release muscles of your scapula. It is not easy to describe. Here is a You-Tube video (http://www.youtube.com/watch?v=z4G0lSwL2os). It would be better if the guy was shirtless to see if he had the right technique, but it looks OK to me.

Along with those, there are various stretches to try. Stand in a doorway and put your arm up at a 45 degree angle as if you were motioning for someone to stop. With your arm against the door jamb, push through the door enough to slowly stretch your upper arm.

Then there is wall walking. I tell you, the internet has everything. I was going to try to explain this, but here is a link that does it with pictures. http://nih.kramesonline.com/HealthSheets/3,S,89905 Like it says; do not try this unless you have been cleared by a professional. I was cleared fairly early. In fact, I think it may have been too early. It was at least before they knew I had the scapular winging. But, the range of motion and strength I have to lift my arm over my head are because I did this exercise from the beginning.

What if your arm is OK and you have a problem elsewhere? Well, for me, my hand was also impacted a few years earlier. All they told me was that I should keep my tendons flexible. Be creative. Your hand is a lot easier to do passive exercise on. People may look at you funny, but you really have to make it such a habit to keep your fingers moving that you do it without thinking about it. Do a bit of passive, and then try to actually move the fingers that will not move yet. I mixed this a bit, and physically moved the finger with my left hand as I tried to move finger of my right hand on its own. It would also help to have some sort of electric muscle stimulation treatments. At least, it helped me. I was lucky that a Physical Therapist who was interested in my case loaned me a muscle stimulation unit that was surplus for his practice. I used this at least a couple of times a week as my right hand returned to function.

Well, that is not quite how I wrote it in my head, but it will do. Good Luck getting movement back!!!

Strength return – Pushups again

On Oct 3rd or so, I had been able to increase my number of pushups back to around 7. Here it is Oct 18, and I have now been able to do 10 for the last few tries. And I have been giving it a couple of days of rest between attempts. Being able to do 10 again seems a bit disappointing in a way. I know the muscle is capable of doing 25- somehow because it was not all that long ago that I was able to do 25. I find it frustrating that I have to dial down my expectations. But, I also do not want to over fatigue myself and hurt my recovery as I did last time.

On the bright side, my right scapula feels pretty good while doing the pushups. But, my upper arms are still pretty weak and the tremors continue.

Tremors and twitches anyone?

It sort of bothers me at times that when it comes down to it, I am not 100% sure what I really have. It almost bothers me more that I was the one to come up with the original diagnosis from the internet. I guess what I am concerned about is that once the doctors had the idea of what I thought I had, that they just went along with that because the symptoms I suggested I had seemed to fit those of NA. Sure, since that point, a couple of different doctors have agreed with that assessment, but what if they are wrong? What if I left out an important symptom early on because it had not happened yet? Now that it has happened, what if they ignored it because it was a new symptom that did not fit the set diagnosis?

One thing that bothers me is the tremors and muscle twitches I seem to still have. I do not see much mention of this in any of the symptoms lists for NA or HNA. I can see how the tremors would happen due to muscle fatigue of impacted limbs, but why if this is such an obvious thing with me is it talked about so little (if at all) in any of the web pages? My recent visit with the neurologist got me wondering about the little tics and twitches I have had since this started. It used to be that I would notice my foot twitch or a hand as I was resting. Or maybe I would kick my lower leg out as if some invisible doctor was testing my reflexes by tapping below my kneecap. But more recently, I have noticed individual fingers twitching. This morning before I got out of bed, I noticed my little finger, middle finger and thumb of my left hand twitch numerous times over a period of a half hour or so. I have to wonder if anyone else has these sorts of things happening to them. Leave a comment if you like. Thanks.

H1N1 (aka Swine Flu) Risk factors for Autoimmune Diseases too

I had seen information suggesting risk factors included immunosuppression disorders, but not autoimmune disease directly. Of course, it is only a theory that HNA or NA has an autoimmune trigger. And, I would think some autoimmune diseases would be more a factor than others.

From Medpedia http://wiki.medpedia.com/Influenza_A_H1N1

“Risk factors are not yet known, other than exposure to pigs or people infected with Influenza A H1N1.
The current outbreak is atypical in that, thus far, the majority of the deaths from Influenza A H1N1 have occurred in Mexico. Furthermore, most have been in young adults. Regular influenza typically affects infants and the elderly the hardest.
With the H1N1, adults over the age of 60 may have protective immunity from prior related infection.

Pregnancy is being identified as a clear risk for more severe illness. (see Complications and "H1N1 in Pregnancy)

Other groups at higher risk of infection and complications from Influenza H1N1 include those with chronic lung disease (including asthma), cardiovascular disease, diabetes, and immunosuppression (including autoimmune disease), and morbid obesity.”

To pushup or not to pushup- that is the question.

After I had pushed things too far and fast, I cut back on pushups completely for awhile. Now, it seems I can do 7 regularly. This is quite a ways off from my recent high of 25 twice in one day. But, it is better than only being able to do 3 or so, which had been my recent average. I will work at this more slowly. I guess it took a few years to lose all the muscle. I should not expect it to all come back in three days.

I may have blown it pushing for more pushups too soon

I have to say that I was pretty stoked with my recent increase in the number of pushups I can do. I went from basically nothing, to 25 within a few days. And then I had to try to do even more that last day and did another 25 on top of that. It may have been too much, and too fast. Friday, I tried again, and I could only do 10. Today, I tried and could only do 7. What is up with this?

I guess I overdid it. Maybe I should have been content with doing them every other day, or stayed at the same counts for a couple of days before increasing the numbers. It felt OK when I was doing it though. Now it feels like I am crashing again.

25 more 3 hours later. . .

I have to say I was just curious if I could do more today, and I did manage 25 more just three hours after the original 25 this morning. I am beginning to think this may not just be a fluke.

Now what? One more pushup update: 25?

Today, I really did not know if I would even try to do any pushups. I was almost afraid that I would fail to do more than a few. And, my muscles in upper arms and chest area and around my lower back were sore. I figured that part was probably a good thing. It meant I was actually forcing muscle back into use that in some cases may not have been used in three or four years at least.

Imagine my surprise when I got up to 25. I do not even remember the last time I could do 25 pushups. It may have been back in High School when we had to do exercise as a part of our PE classes.

What is there to learn in this? Never give up!

If I had just sat around thinking I was weak, and my muscles were not going to recover a bit of strength, then that would become my reality. It would have been easy to just let myself waste away into nothing. But, it feels a lot better to know at least some of my strength is back. How long this will last is still a mystery. Since my doctors at this point have little if any input to my long term health related to NA/HNA- I have to take care of it myself.

DO NOT GIVE IN TO IT!

And today, 20 pushups

I was almost afraid to try today to do any. What if I had returned to being able to only do 3-4? I have to say I never thought I would see the day I would be able to do 20 pushups again. It may seem a little thing to some. But you who have had the muscle loss from NA or HNA and have had to fight back for every little gain on what you had lost should understand this. I have to make the most of it while the response is there. I have to regain every bit of strength that I can at this point. Because my NA/HNA has shown itself to be able to repeat at intervals that I have no control over, I have to get stronger while I can. I know from the past that my return to normal strength will no doubt not be complete anyway. And who knows what will happen tomorrow? Where will it hit next?

Pushups again- Not a fluke this time anyway-

I truly expected that the next time I tried to do pushups; I would be reporting fewer than 10- the number I did yesterday. It just seemed to me that was the normal pattern of the past. So, imagine my surprise just now when I did 15!!! Unheard of. Well, it was 15 just now, and my arms feel much better. In the past right after attempts to do this, they have really been shaking uncontrolled for a time after. This time, it is only a few minutes ago that I did them, and I have no shakes from the effort. And, my back felt a bit better this time too. We shall see if this continues.

Pushup Update

Long term readers (if there are any) may remember the saga of my pushup history. A brief recap is that just after my right scapula started to wing in late 2006, I could still do around 20 or so pushups. A month or so later, that started to decline to the point where I could not do even a single pushup. Since then, the number I can do has varied from around one, to a high of four or barely five. Usually, I could only coax 2-3 out of my body before I would collapse.

There may be hope. Today, I was able to do ten.

Now, this still was not easy. I barely got to the tenth one. But, it was a full ten as low to the floor as I could ever go when I was stronger. One thing I noticed- other than my wrists feeling like they may break before I was done- was that my lower back and upper legs shook like crazy when I was doing them. Shaking may not be the right word. They just felt as if the muscles were firing inconsistently, and pulsing instead of holding steady as they should do. I used to wonder about that happening. Now I know it is due to the NA or HNA impacting nerves in my lower body and legs.

I said there may be reason to hope that this may be improving, but I am not really confident that will happen for me at this point. I am better today: maybe not so much tomorrow. This seems to go in cycles.

One thing it points out to me though is something I have said before. Never give in to this. Just because it seems that a muscle is no longer working, keep trying. If it is not working today, try again in a few more days. You may see a change. You may find a glimmer of hope.

Edging the lawn- revisited

In an earlier post, I described my efforts at running a weed whacker around our lawn’s perimeter. We have a third of an acre, so this is a bit of a job. Well, lawn grows and like any yard work, if you do it one time, you have to do it again, and again. That goes well with what my last doctor said. He thought I should be doing a bit more.

Last time this job about killed me. Although I am not sure I am improving much at this point overall, this time running the whacker around the yard was not nearly so bad. Of course, it still did me in. I just had a faster recovery, and my arms did not shake nearly as badly, or for as long as they did last time. Why was that?
Since I am not sure I have really improved, I figure that my improvement with this job was more due to the fact that I learned how to do it in a way that was less demanding. This is one thing I have learned about over the last few years with NA. When you stop improving in your recovery, any improvement noted in doing tasks after that seems to come from your coping with the injury in new ways. If it bothers your arms to reach out to hold the weed whacker, hold it more in towards your upper body being sure to hold the upper arms against your body. If pulling the trigger makes you position your arm in a way that ends up hurting, use another finger to trigger it, and hold the thing differently.

Don’t get me wrong, I was still shaking at the end, but instead of having to let it drop out of my close to lifeless feeling hands, I was able to set it down. Instead of requiring a couple of hours of rest before I could think about moving again, I only rested a relative few minutes and then I could put it all away again until next time. Of course even though the aftermath of this run was an improvement over the earlier time, it did finally catch up with me later that night. Most things I do in the early part of the day do catch up with me now. And that is just one more thing with which to cope.

Just what are the terms? PTS, NA, HNA, BPN

Parsonage Turner Syndrome would appear to be a more historic version of the disorder also known as Neuralgic Amyotrophy. Use of that older term honors the doctors who first described the disease that seemed to impact the right brachial plexus in most cases. They noted numerous probable causes including virus, parasites, bacteria, surgery and trauma (other than to the shoulder) that can cause an inflamation to the brachial plexus (aka "brachial plexus neuritis").

In addition to these causes, there is also a more rare type that is caused by a defect on chromosome 17, spoken of elsewhere here. This is a totally distinct disorder. While you can have recurrence of attacks in the acute form of PTS (NA), it is more common to have recurrence in the hereditary version of PTS, aka Hereditary Neuralgic Amyotrophy. It is also more common for the hereditary version to attack on both sides when it attacks. It is also more likely that if you have the hereditary version, your attacks could involve numerous different plexus sites, other than just the brachial plexus. It is interesting to see sites suggesting that HNA only involves the brachial plexus, and then have it go in to suggest that HNA can also impact your voice and breathing. The nerves for these functions are not in the brachial plexus. HNA can impact the following plexus sites: cervical, brachial, lumbar, and sacral. It also can impact the intercostals.

If your doctor seems to suggest that you have a right winging scapula for example, and you notice that your left arm is also weak, chances are that your left arm is also being impacted. My doctors tried to tell me my right arm was weak from lack of use instead of the weakness being due to NA- of course this was because as we all know, patients generally fully recover from PTS. When my left arm became weak with similar symptoms, they told me it was from overuse- making up for all of the times I tried to help my right arm by using the left. In truth, the left side weakness is also from NA, or possibly HNA. A later doctor confirmed I also have winging on the left side. If you have weakness in other areas, have it checked out. Your attack may be more involved than your doctors first thought.

All through my initial couple of years of doctor visits, I complained that I had lower back pain. Of course, they concluded it was not related. How could a right shoulder nerve disease also impact the left side of my lower back? Well, now you know. It is possible.

My legs shake in certain positions when trying to hold them against gravity. Is that a possible symptom? Of course it is. My arms and hands shake due to muscle fatigue of my impacted arms. This leg shaking is similar in nature. Since I know that my legs are innervated by a plexus site that can be impacted by NA/HNA, it is not a stretch to think that this is also an impact of the NA/HNA. And now my doctor has confirmed that I may have involvement with my legs

Whatever your doctor calls it, and whatever side your main impact is on, make note of similar symptoms on the other side, or in other regions. They could help in develop a more conclusive diagnosis.

Still no change- maybe that is a good thing

At this point, I guess I have resigned myself to the fact that my shoulder strength may not ever return. At three years into my last major attack, I would have thought there would be at least some return, or a small incremental improvement that I would be able to pin a bit of hope on. Nope; nothing is happening. I have pretty much leveled out to being able to do only three push-ups, and they are a struggle. From the first one my arms are shaking so much I doubt I will be able to continue. At the second one I think, maybe I can get up to five this time. At the end of the third one, I know that is all I will be able to do.

And what about that flare-up I mentioned a while ago? Well, so far, I have not noticed any further losses related to it. But, it really has not been very long at that. I hope maybe I stopped the progression of damage with the prednisone. Everything in my neck and jaw has quite returned to normal by the way. My jaw muscles were sore for a few days and very stiff on the right side when I opened my mouth. But all is normal now. I can chew on that side without any discomfort. There is no lingering tenderness in the neck just below the jaw.

Now I just wait again until something else happens. I check my strength every few days. I can tell by my shaky arms and hands that nothing is improving. I just have to hope that it does not get any worse.

Just another weird coincidence with chromosome 17 and CMT disease?

From

http://www.ninds.nih.gov/disorders/charcot_marie_tooth/detail_charcot_marie_tooth.htm


“What are the types of Charcot-Marie-Tooth disease?


There are many forms of CMT disease, including CMT1, CMT2, CMT3, CMT4, and CMTX. CMT1, caused by abnormalities in the myelin sheath, has three main types. CMT1A is an autosomal dominant disease resulting from a duplication of the gene on chromosome 17 that carries the instructions for producing the peripheral myelin protein-22 (PMP-22). The PMP-22 protein is a critical component of the myelin sheath. An overabundance of this gene causes the structure and function of the myelin sheath to be abnormal. Patients experience weakness and atrophy of the muscles of the lower legs beginning in adolescence; later they experience hand weakness and sensory loss. Interestingly, a different neuropathy distinct from CMT1A called hereditary neuropathy with predisposition to pressure palsy (HNPP) is caused by a deletion of one of the PMP-22 genes. In this case, abnormally low levels of the PMP-22 gene result in episodic, recurrent demyelinating neuropathy. CMT1B is an autosomal dominant disease caused by mutations in the gene that carries the instructions for manufacturing the myelin protein zero (P0), which is another critical component of the myelin sheath. Most of these mutations are point mutations, meaning a mistake occurs in only one letter of the DNA genetic code. To date, scientists have identified more than 30 different point mutations in the P0 gene. As a result of abnormalities in P0, CMT1B produces symptoms similar to those found in CMT1A. The gene defect that causes CMT1C, which also has symptoms similar to those found in CMT1A, has not yet been identified. “

Charcot-Marie-Tooth_disease -And early onset Glaucoma

http://en.wikipedia.org/wiki/Charcot-Marie-Tooth_disease

I am making a quick post for this. Some symptoms are similar to HNA/NA, others not. But, there is one "phenotype" of CMT I see that does cause early onset glaucoma. One thing though- the weakness pattern is similar to HNA, but I have not seen any entry for CMT that talks about winging scapulas, of anterior interosseous nerve problems I have had. My guess about glaucoma and HNA, if it is related to HNA at all, no one has taken the time to check into it yet.

Flare-up update

Well, whatever this was, it seems to be over. The first two days of the prednisone I also took ibuprofen. The next two days, I quit the ibuprofen. Now, it seems to be back to somewhat normal- whatever that is anymore. If this was a real flare-up, I guess I will see fairly soon what will happen now. If not- I wonder what it really was.

Possible flare-up

One thing I have noticed since all of this started is that I am very sensitive to any little pain that may pop up, and I worry that it may be the harbinger of further losses in my near future. Here is an example.

For the last couple of days, I have had my usual headaches on my left side, but I have noticed that I seem to wake up in the morning with the headache already going strong. On occasion I have also had some pain travel across to the right side, and sometimes it seems it has been centered in the area of my right jaw. I had begun to wonder if it was related to my teeth, but it seems to move around and be more associated with the muscles of my jaw. About then I notice that my neck on the right also feels quite sore and tender, and my upper shoulder is also beginning to hurt. I think here we go again- what am I going to lose out of this round?

You do not really think much about how simple a thing it is to be able to hold your head up, and turn it from one side to the other until that attempted movement causes you pain- whatever this is caused by. Ibuprofen does not help, and it is the strongest thing I have at my disposal at this point. Then I remembered I still had some prednisone, so I tried that. Prednisone had been prescribed for me to use in the event that I felt an “attack” coming on. The thought is that it might help mitigate the losses by knocking back some of the inflammation of the nerves. Whatever this is, it seems to have helped. Now, I just have to hope that I caught it before much additional damage happened.

You might wonder, and maybe I do at times also- why I do this. Well, one of the first things I realized after I started to get an idea of what I had going on, was that there did not seem to be a lot of good information out there, and there were not any places that told about NA or Parsonage Turner Syndrome from the point of view of the patient. In other words, once I left the doctor’s office, I felt totally alone.

As it turns out, there is a wealth of information, although some of it is not complete, and other parts are a bit misleading. And, even though I felt alone, I knew there had to be others out there- as rare as this is.

This blog lists some of the better sites I have run across as far as descriptions of what to expect in NA or HNA. It also talks about what I have found in my progress or lack there-of, over the years since this started for me. Through it, I have met a few people who also have this affliction in their lives.

You are not alone.

I have links to these sites also. Through them you may be able to contact others who have PTS. Since PTS seems to have an official cause of being an auto immune caused disease, these links go to sites for all autoimmune diseases. There are forums available on these two sites, and there are PTS threads. Or, feel free to start your own. Here are the links again:

The Autoimmunity Community
http://autoimmunitycommunity.org/phpBB/

American Autoimmune Related Diseases Association
http://www.aarda.org/forum2/

Here is something from the Seattle Children’s Hospital Research Institute’s Research Center for Genetics and Development

Here is the site.

They are doing research on HNA and a few other genetic diseases. I have cited web pages before with previous research done by Drs Hannibal and Chance.

More on “The clinical spectrum of neuralgic amyotrophy in 246 cases”

There is an awful lot to absorb in The clinical spectrum of neuralgic amyotrophy in 246 cases .

My last main attack happened in Oct of 2006. In Nov of 2008, I had a sudden episode of blurry vision. By the time of my appointment to have this checked out, my vision had started to return to normal, and by the time my new glasses were ready, it was fine- and that particular prescription was never quite right for me. During the exam, the doctor found that one eye had pretty high intraocular pressure, and the other was a bit higher than what is considered normal. After a range of eye tests, and rechecks of my eye pressure, it was determined that I had glaucoma. When I asked specifically if the blurry vision was related to this, they said it was not. What was it then? No one has told me. But, it was the reason I went to the doctor only four months or so after my last most recent exam showed I had no problems.

What did I do? I assumed my previous eye doctor had messed up somehow, and not noticed my pressure had been increasing- or if they had noticed, that they did not tell me to watch it. I went back to them and got a print of my eye pressure readings over the last five years. It showed that the pressure was normal until 2006, and then started a slow rise with a peak in early 2008. The cause overall is not really known, but there are certain population groups that are statistically more likely to develop it in their lifetime. I was not in one of those groups. Why did I get it? Just lucky I guess.

Of course, one thing I thought of immediately was if NA or HNA could increase the chance I would develop some other disease, like glaucoma. I could not find, and still have not found any study or site that suggests a link. Blurry vision can be an early indication of up to 774 medical conditions according to Wrongdiagnosis.com, including glaucoma. Hmm. Maybe I need a new eye doctor too. Anyway, the one I was thinking of considering my other problems was optical neuritis, which can be a precursor to Multiple Sclerosis. Optical neuritis usually only causes blurred vision in one eye, and both of mine were blurred, so maybe something else was going on? But, was it was a stretch to think that a neurologic problem that caused a shoulder to go bad could also cause an eye problem? Since then, I have learned a lot about this particular problem though. It is never as simple as just saying that because the main complaint of those with NA is that they have right shoulder problems it means that any problems they have will be restricted to that area. As this study referenced shows, it can pretty much impact any nerve group any place. They say there is “no significant difference in clinical characteristics between INA and HNA patients, except for the age of onset and the total number of attacks, and possibly for the involvement of nerves outside the distribution of the brachial plexus, such as the phrenic, lumbosacral plexus, intercostals or cranial nerves, which has mainly been reported in HNA (van Alfen et al., 2000 )”.

I am not sure about the intercostals involvement, but that reference to cranial nerves jumped out at me. This is because the second cranial nerve is the optic nerve, and that may provide me the link I have searched for. If HNA/NA can involve the cranial nerves, it is not a real big stretch to think that it may have been the underlying cause for my case of glaucoma. Because if you look at the eye pressures I had as tested, they are about normal before Oct 2006, and then they start to climb. My blurred vision episode had been preceded by periods of eye pain, and tearing. Blurred vision can be a symptom of glaucoma.

I am curious if anyone else out there with HNA or NA has had vision problems.

The clinical spectrum of neuralgic amyotrophy in 246 cases

I think I may have cited web pages that refer to this study in the past, but this link I have added goes to the main study results where before I may have only been able to find the abstract to the study. Click here for the complete listing-

This study was quite extensive as are the results in the web page, and is worth looking into if you are a NA/HNA sufferer. I will leave a link to the pages out to the right in my links section.

That’s funny, you do not look sick. . .

Related to this, see my link to the right for “Spoon Theory- Funny, you don’t look sick. . . “

You know, one thing about NA/HNA is that because the expression of the symptoms can vary so much, it is hard to really for someone else to see that it is impacting your life. In fact, just to look at me, unless you were a trained health professional, you may not be able to tell I had anything wrong unless I took my shirt off, and you saw my scapula were not right. And even if you were a health professional, you may miss it.

In my previous entry I described how doing relatively easy “work” for an hour impacted me and my arms and hands. That shaking was real to me, and it is really one of the few outward signs that I have of this “disease” that others may be able to see. Yet, even though others may know I have this condition, and they see it manifest in this manner, they still make comments like, “Oh, you are a weekend warrior- I guess you must be a bit out of shape.” Well, yes I am no doubt a bit out of condition right now, but it this shaking is not due to being a weekend warrior in the garden. “Well, look at that, I am out of shape too- See how my hand is shaking too?” Yes. But the difference is that my hand was shaking before I started to work out here, and at this point, I am not sure I will be ever to ever get back into a condition where my hands to not shake. It may be true that your hands shake a bit after doing too much work- but my hands shake all the time. It does not matter if it is picking up a paper cup of coffee at Starbucks, or after working out in the yard for an hour. My hands will shake. In fact, I can wake up in the middle of the night when all I have been doing is sleeping, and if I reach for the covers with my left hand, it will shake.

Well, I can’t complain too much about this. The other person spoken about here does not want me to think of myself as being different than I have ever been. And, I do not want to roll over and let the condition take the rest of my life away by acknowledging that since I started to express certain symptoms, I can’t do this, I can’t do that. Sure, there are certain things that I do not feel comfortable doing now. But, I can still do a lot. It is just that doing some things takes it out of me in a different way than it used to. Doing this job of edging the perimeter of the lawn used to be a job I could do with no problem. Then I would go on and do the next thing, and the next thing, etc. Now, doing the perimeter edging is it for the day. After that, I am done. And if there was a job I got to before I tried the edging, it may be that only part of the edging will be done, or if it is completed, I will be done for a bit longer. I am learning that there are limits to what I can do anymore, and I do not like it. Sure, I am getting older and maybe there would have been age related limits at this point anyway. But, I am getting those too. It doesn’t seem fair.

But, I know there are younger people learning that they have NA/HNA every day. At least I did not develop symptoms until I was in my mid 40’s. I know of a family who has a young child who has had two attacks already, and has bilateral winged scapulas at around age 10. I think of him and realize I really should not complain about my lot. I guess I am lucky I do not have worse going on with my health.

Just when I thought it was safe to go back into the garden. . .

I have tried to take it easy doing manual labor type stuff around the yard, but sometimes there are things you just have to do. So, I have tried to do some pruning and other light work that minimizes shoulders and arms. I have done pretty well at my few attempts at yard work. If it is too heavy, I know right away to stay away from lifting it. Then, there is the simple task of edging the perimeter of the lawn with a weed whacker. It is simple if you have normal upper body strength and no neurologic difficulties.

The weed whacker is only a few pounds, so it s well under my weight limits, and I am not lifting it over my head, so that is all within my restrictions. And for the first little while I am fine. I do not feel that I am hurting anything. It involves a period of time- maybe a bit over an hour- of holding the main handle with the left hand while holding down the power button with the right. I try a few fingers on the right and end up using my middle finger. All feels fine. Sure I can tell I am getting more tired as I go. My upper back starts to feel like it normally does after doing a posture like this for a while. I still do not feel anything out of the ordinary as far as my shoulders or arms go.

Then I stop.

I about dropped the thing to the grass, my hands had such bad tremors. I went over to pull the plug from the main power outlet, and I only had to grasp it. My shaking hand did the rest. I lifted my left hand to brush my hair out of my eyes (my left seems to be the worse off as far as this type of tremor goes) and I had trouble even getting it up to my face. My entire arm was shaking, and my hand seemed to be going on its own. Even trying to rest, it took a bit of concentration to let them rest enough to stop the shaking.

Even an hour later as I type this, it is not as easy as it usually is to type correctly. It is funny that the last few days I had started to believe I may not really have anything wrong with me after all. At least nothing as bad as I had worried anyway. It all seemed to be getting better. Then I had to go and push it a bit harder than I should have.

short update

Well, I have not got much of an update at this point. It is interesting to me at least, that in a search for new information I could pass on out here, a search in Google brought up my own blog entries a number of times.

I had been doing pretty well recently as far as staying pain free. That ended last night with a sneeze. This was noteworthy because it popped my left shoulder in the area of my scapula. I do have slight winging on that side, so I am increasingly nervous about any new pain related to my left side in that area. Of course, no good sneeze anymore only jerks one part of my body. For the rest of the night, my neck and upper shoulders on both sides were very sore. I am not suggesting the sneeze as a cause of any ongoing problem, but it sure shows how something so simple can irritate an existing weakness.

Long before I noticed any problem with my right shoulder, I remember waking up on my right side in time to notice a POP in my shoulder that was followed by a noticeable settling. So, who knows? Maybe a sneeze could be the final thing that starts a new attack. I mean, I had been sleeping on my right side like that as long as I can remember, and have had no trouble. But with a slightly weakened shoulder, that pop could have been the start of that attack for me. Sites seem to suggest that exercise can bring on an attack. Maybe something as innocuous as a sneeze or simply sleeping could do it also.

Winged Scapula may need flashing “warning” lights?

I, for at least one, am sensitive about anyone touching my affected right scapula. I am not sure why, or if this is common- but if anyone comes close to touching me, I want to punch them- Well, maybe that is extreme, but at least I want them to stop. It really does make me feel nervous.

Today I was at one of our local home improvement stores- just standing there, and suddenly, I felt something brush past me that bumped my right scapula. I had no idea it stuck out that far that this might be an issue. That is why I am considering getting a flashing light attached somehow. I am joking a bit. Come on everyone- It is called personal space. If you pass by someone close enough to bump their shoulder blade, you are too close. Of course, I guess mine must be an additional inch or two further out than anyone else. That is still too close. Maybe a red flag would do?

Short update

I had planned to see my own regular doctor yesterday just to get him into the loop with my NA. I had not gone into anything with him before this since it was a workman’s compensation case, and I was still seeing doctors through them. But, I had not had a regular workers comp visit for over a year, and they had pronounced me stable, needing no future medical care (like they know) and all that other mumbo- jumbo that makes more sense to them than anyone else, so I thought I was in the clear to see someone else and get another opinion. Evidently, since the comp case is still open- whether I am seeing anyone now or not- my regular doctor cannot bill any services on anything that workers comp is still looking into. Until the claim is closed, I am in limbo about asking for any other guidance about it. I have waited this long: I can wait longer.

I hope that does not preclude me from trying to find out what caused this in other ways.

In my ongoing strength/weakness test of pushups, today I can do five, barely. And now I am shaking just typing this. It varies a bit day to day, but overall, the weakness is persisting.

Possibly an attack prior to 2000 I had forgotten about

I was discussing my shoulder problems with someone yesterday who reminded me that I may have had a related shoulder issue way back in 1983. I do remember that muscles in the area of my right scapula were extremely sore for a number of weeks: so much in fact that I had difficulty breathing fully and movement was severely restricted. They also remembered that this pain went up into my neck making it difficult to keep my head supported without pain. It is funny how you can block out bad memories, but I do remember it now. I wonder if this is the attack that started me down the current path, or if it was just a very stiff neck. I think if this is related, it would pretty much nail down HNA as the correct diagnosis because it would show the pattern occurring over a much longer time than before, and would mean I have actually had three attacks that I can remember.

From the Dutch Neuromuscular Research Center

This Dutch Neuromuscular Research Center site is one of the better web pages I have seen about NA and HNA.

Something I have been trying to determine for myself is whether I have the idiopathic or the hereditary version; NA or HNA. Here it is suggested that at least statistically speaking, I may have more of a chance to fall into the hereditary group.

From the site:

“In the idiopathic form of NA, patients usually suffer only one attack in their life. Only 1 out of 20 people suffer a second attack, sometimes within months, sometimes many years after the initial one. In the hereditary form, attacks recur more frequently, and the average number of attacks is one per 6.5 years.”

It is still not proof of anything, but the time from my first to second attack was around 6.5 years. I certainly would not want to upset the average.

The site also warns against possibility of developing a frozen shoulder if the pain never allows enough full movement. I was lucky there I guess. My pain was not bad enough to cause any further movement problems.

The ailment is varied with how it impacts each person. From the site:

“Because of this clinical variability, it is difficult to predict an individual patient his or her prognosis, unless the personal course and severity of the paresis are fully taken into account. Most textbooks say that after 2-3 years, over 95% of the patients will have recovered fully; however, our own experiences with both INA and HNA patients in the past 8 years have not been as hopeful. Although most people do show signs of recovery, and keep improving in the first 2-3 years after an attacks, many are left with persisting impairments or handicaps because they have not regained full strength or endurance of some muscle groups, or have shoulder joint instabilities and altered mobility which causes tendomyogenic pains. In a previous survey, 1/3 of patients with HNA were permanently unable to work because of their disorder.”

Long term Pain and Fatigue Study

In the March 2009 Archives of Physical Medicine and Rehabilitation there is a study listing (Long-Term Pain, Fatigue, and Impairment in Neuralgic Amyotrophy) that says “it has become clear that neuralgic amyotrophy (NA; idiopathic and hereditary brachial plexus neuropathy) has a less optimistic prognosis than usually assumed.” Great, I thought it would be good news. They conclude “A significant number of NA patients suffer from persistent pain and fatigue, leading to impairment.”

Part of this no doubt is because if your NA is the type that recurs, you are just getting to feel a bit better from one attack when another one takes you down again. Anyone who has NA or HNA could probably come to that same conclusion.

Sometimes functions that had been lost return- almost

When I first had any problem related to PTS or AN, whatever you want to call it, it was my right hand that was impacted. At the time, everyone thought this was a simple case of Anterior Interosseous Nerve Syndrome. The only problem was that I had not had any of the common triggers of this syndrome. I thought my doctors had the diagnosis nailed down. After all, they were hand experts. Of course, now looking back, it bothers me that none of the experts ever listened to me when I told them that it all started in my upper arm. I tried to give them clues even then, and even though I did not really know what clue I was trying to give.

Out of the blue, I have this very rare problem that seems to have rendered my right hand almost useless. I say almost, because it was still OK for things that did not require any finesse. I could not pick up a pen, and even if I could pick one up, I could not write at first. It took me a bit of experimentation to find a way to hold a pen, and then a bit of practice to relearn the wrong way to write- simply by moving my entire hand instead of holding the pen, and making use of the finger tips to control making the letters flow.

From earlier posts, I have mentioned that I was constantly keeping my hands and fingers of my right hand in motion. Part of this included trying to hold things with my thumb and index finger. Early on, I was not successful holding anything. I could barely hold my thumb and index finger together tightly enough to do any movement. Over time, this changed and I could get them to hold together and even bring them from the flattened finger pinch back into a more standard O. At that point I started to try that exercise with a pencil between my fingers. My doctors all thought I would never regain use of my hand without surgery, so I had a lot of incentive to prove them wrong.

I eventually had some return of my index finger movement. Shortly after that, I started to hold the pen or pencils between my index finger and thumb, and with my left hand, I would grab the pencil and move the tip while I tried to keep hold it with my almost useless finger tips. Over time, I could hold on with more strength. On occasion I would try to hold the pencil or pen down against paper. Usually, this action caused one thing to happen. That would be the pen or pencil flipping away from me. Eventually, I could hold the pen in contact with the paper, and I would try the next step; to move the pen against paper. And of course, that would flip the pen out of my hand. After a while doing this, and also trying to hold the pen as my left hand pushed and pulled it, I finally could move the pen against paper again. Then it was like trying to learn to write again.

The initial attempts look just like that. I could not even read what I was trying to write. But, now all these years later I can use a pen pencil right handed, for short use anyway. I could never write anything like this document by hand. Even writing out a check at a store I can lose my grip and drop the pen. But, generally I have enough strength to write short things- writing checks or short notes are OK. Much more, and I try to do it on computers and print it out.

Pushup Update, Updated

Just for those who are interested in how this impacts strength at any given time, I have another update. Earlier I mentioned I had worked up to ten pushups again, after not being able to do even one for well over a year. I tried again the very next day, and I had trouble finishing ten. I tried again after a couple of days, and I was back down to two. This is a bit odd to me, but I guess that is the way NA works? It seems you can only get back to a set amount of muscle use after the loss of that use, and then the muscle gets so fatigued after a couple of days of that exercise that it drops back down again to prior levels? Here I thought maybe my strength was returning a bit, but now it seems like it is back to almost as low as it ever was. I am not sure this is the normal progression in cases like this, but it is what I am seeing in my own case.

This is a summary of how my injury impacts everyday life

Starting with sleep, this is an all the time thing. I seem to wake up every couple of hours to change positions. This is generally from my back to one side or the other. If I am on my back too long, my right arm starts to go numb. If I am on my left side too long, my right arm also goes numb. This numbness starts in the hand. It can be both my thumb and index finger first, or from my ring finger to little finger. Usually, this is only a few times per month. But recently, I have had nights where I woke up three times in the same night with numbness. At times I wake up with pain in my shoulder blade area, or pain in my lower arm.

Upon waking up for good, and getting dressed, I have to be aware at all times that my right arm acts like it is dislocated. This is especially true when putting on a pullover type shirt. I have to treat my right arm with care at all times, or it reminds me. My right shoulder pops and clicks at most movements doing this, and pulling up pants or other clothes.

Sneezing and/or coughing if I am not braced for it can lead to jabs of pain in my right scapula, and leave me with pain radiating down my right arm. Luckily, my coughs have been of short duration recently. Sneezing is another matter. Certain times of the year I tend to sneeze more than others, and each one of these can recoil in my shoulder causing pain no matter how I try to brace for them.

I have to bend my head down to wash my hair. I sometimes have trouble holding my toothbrush tightly enough, depending on the design of the handle. Lifting my arm too high causes pain on the shoulder. Because of this, I tend to do these activities very quickly to minimize the arm loads.

As with all things I have to do with my right hand, I tend to drop things if I am not constantly mindful that my overall grip strength and strength in my right arm is impacted by this.

Preparations of things in the kitchen are impacted. This is especially important. I have trouble with using knives to slice anything. I have to use my left arm to reach anything on higher shelves. For the things I can do right handed, I still have to use my left hand to provide support. This is true of most things. One example is use of a coffee maker. I can barely hold the full pot long enough to use it, and have to support my right arm to steady it, or it will shake so much that I will spill or drop the entire thing. The only way I can hold a full pot is to steady my upper arm (from shoulder to elbow) against the side of my body. I cannot extend or lift the pot without support of my left hand. Even with the support, my wrist aches at this time. I have to ask for help cutting things with a knife because of pain in my right wrist from having to grasp the knife.

Eating is also impacted. I have been known to have the utensil slip out of my right hand during use.

Completing odd jobs around the house is impacted. If I can keep my upper arm tight against my right side, I am better off, but how many jobs around the house allow that? As an example, I had to change a component in part of our alarm system. This required use of my right arm extended to the wall on which the item was mounted, flipping off a cover, removing two screws and a circuit board, replacing the new circuit board, putting the screws back, and putting the cover back on. In the old pre shoulder injury days, this would have been a ten minute job. This time took me 30 minutes, and at the end my upper shoulder and neck was tense and sore, and I had a headache. The reason I think was that loss of my right hand dexterity caused extra time to be spent fumbling at this simple task. This caused me to keep my arm extended longer than I was able to without discomfort.

Projecting this to other jobs around the house, I have to think of ways to do everything with minimal right arm involvement. And, with all things, I have to constantly be aware of how I can do anything without dependence on my right arm, and hand. I have a three pound dumb-bell that I try to lift right handed. Using my biceps with arm close to my side may work for that, but if I try to lift it by extending my arm away from my body, I have trouble. Jobs requiring this type of movement or extension are hard to accomplish.

Shopping, I also have troubles reaching items on higher shelves. I use my left arm for that. Sometimes I forget my right hand is not as strong as it used to be. I grab a carton of orange juice. Next thing I know, it is on the floor.

Driving is impacted. Sitting against a high seat with a winged scapula tends to make me sit a bit lop-sided. Sitting in any chair with a back can also cause this. It tends to make me twisted no matter how I sit, and I think this adjustment may be one extra cause of my headaches. I may not get the headache until later, but sitting while having arms extended to do simple tasks can lead to headaches.

Steering while driving is something I tend to do more left handed than before. I try to keep my right hand on the wheel, but it is not the one I depend on to do hard steering, like getting in and out of parking places, etc. Without power steering, I would be unable to drive safely at this point. Using my right arm leads to pain at shoulder. Looking over my right shoulder causes pain in my neck. Quick movements driving lead to jabs of pain.

All considered, there is not one thing I do daily in which I can take it for granted that my right arm and hand will function anywhere near a level prior to injury. If I forget, I drop things. It is a constant reminder of my injury and how I must adapt to do even simple tasks.

Push-up Update

Today I did 10 push-ups, but it feels like this is the plateau for now. This is starting to feel familiar. I work up to a plateau, and then can go no further. Last time, my weakness returned about now. Maybe this time I can maintain at 10 – well, no fewer than 10 anyway.

Do not give in to it

One thing to remember with this is that you should never give in to it completely. If you feel weak, and it seems strength is never going to improve, just try again another day. Part of dealing with this is that the muscles may stop completely for a time, and ones you have left may fatigue easily. This can lead you to believe that you are destined for complete paralysis. And, if you give in to it, and stop trying, you may as well be paralyzed. I know of at least one case of what had been diagnosed as Brachial Plexus Neuritis where the individual had such pain that they stopped trying to move the impacted arm at all. Last I heard, he could not move it at all, and there was talk of amputation. I should say here that I have never met this person, and they may have other stuff going on in their life that is impacting this. And, the diagnosis I know of may not actually be correct. But, it does serve to illustrate my point, which is that you should keep trying to move, even when all logic tells you that it will not improve things.

I think that the only reason I can move the thumb and index finger of my right hand at all today, is that I never stopped moving them, or trying to move them, even though the expert doctors I had at the time told me that the only way I would regain movement would have been to have tendon transfer surgery. I know that if I had stopped moving my fingers, just outright stopped trying to use my right hand, that those doctors would have been correct. I would then have needed surgery of some kind.

When I had the more recent flare-up that lead to the winging of my right scapula, no one ever mentioned surgery as being anywhere in the future. But, they also did not tell me how profound the weakness in my arms would eventually become, or how long that would last.

My winging scapula happened in Oct of 2006. At that time, I could barely do a push-up standing against a perpendicular surface. By December, I could do 20 standard push-ups on the floor. At that point, I thought this would be a minimal impact to me. When I tried in mid January, I could only do 15. Two weeks later, I could only do 10. Next time I tried, I could not push myself off the floor at all. For the next year or so, I tried every day to do push-ups at a 45 degree angle off of a desk at work. I slowly worked up to where I could do 20 or so of those. Then suddenly, I started to feel very weak and fatigued after those attempts. My arms would just start to shake. Notice, both arms were shaking. At this point, there was no thought that this could be impacting my other arm. Gradually, my total numbers in each session dropped off just as they had initially, and finally I could not do one push-up even at 45 degrees on that desk, and my arms and/or hands were shaking at the least exertion.

Now going on 3 years into the second bout of this, I was ready to give it up. I was weak, and I felt like it would be like this forever. But a day or so ago, I tried again to do a real pushup from the floor. I could do one- for the first time in a couple of years. Today, I did 5. My lower back and shoulders are killing me. My right hand feels like it will fall off at my wrist for some reason. But, I could do some push-ups. Maybe other small returns are also possible.

Neuralgic Amyotrophy updated

As it turned out, my neurologist did not get the link to the Vitiligo and HNA being located on the same chromosome- or if he did, he did not mention it in the final report. It would have thrown a monkey wrench into his argument as to a cause for my problems. It is something I am still wondering about though.

One further thing of interest that he mentioned- actually two things now that I remember it- First, he thinks that my current problem with the right scapula is a later flare-up of the first problem that had been diagnosed as Anterior Interosseous Nerve Syndrome. He says that in cases he has seen with both problems, the hand issue preceded the later involvement with the shoulder.

He also said that in cases of PTS or AN- that 30% of time you will see bilateral involvement. So in all those websites that imply it is just on the right, remember that while it might well be “mostly” one-sided, in around 30% of the cases, it may be bilateral to a varying degree. In my case, I do not have winging on the left as I do on the right, but the weakness on the left is just as severe as on the right. I do not have the history of paralysis of my thumb and index finger on the left hand as I do on the right, but I do have a weakness and slow response for fine motor control on the left hand just as I do on the right.

Then, also keep in mind that there is more than one nerve plexus that could be impacted. I have definite bilateral involvement of the brachial plexus (shoulders and upper body.) I also have suspected involvement of the lumbar-sacral plexus (lower body and legs) based on the inconsistent reflexes and certain symptoms I have noticed over the last few years. There is also the cervical plexus (head and face- also frenic nerve to diaphragm) to be concerned with. He did not say directly that I have involvement with that, but I wonder if he thinks I did because of the questions he asked me.

This may be more involved than you have been lead to believe. If you have symptoms that the doctors are ignoring, be insistent. Make them explain the symptoms, or get to a new doctor. Again, if it is only Neuralgic Amyotrophy you are dealing with, it may not be life threatening. But, there are other things out there that are similar. Make sure your doctors rule those things out before you settle on the diagnosis.

Interesting Chromosome 17 Coincidence-

Previously, I had mentioned that the genetic version of PTS was thought to be caused by a gene defect on Chromosome 17. There are only 200 families known to have this particular defect. This is known as Hereditary Neuralgic Amyotrophy, or Hereditary Parsonage Turner Syndrome on some sites, although I suppose more now seem to recognize the name HNA when dealing with the hereditary type. One thing that my Neurologist pointed out, which I had realized before, is that I have Vitiligo. Looking at this, which I had never thought to do before, I found that it is linked to the same Chromosome 17.

From Wikipedia on Vitiligo (http://en.wikipedia.org/wiki/Vitiligo)

“Vitiligo is associated with autoimmune and inflammatory diseases, commonly thyroid overexpression and underexpression. JA study comparing 656 people with and without vitiligo in 114 families found several mutations (single-nucleotide polymorphisms) in the NALP1 gene.The NALP1 gene, which is on chromosome 17 located at 17p13, is on a cascade that regulates inflammation and cell death, including myeloid and lymphoid cells, which are white cells that are part of the immune response. NALP1 is expressed at high levels in T cells and Langerhan cells, white blood cells that are involved in skin autoimmunity.”

From Wikipedia on HNA (http://en.wikipedia.org/wiki/Hereditary_Neuralgic_Amyotrophy)

“Hereditary Neuralgic Amyotropy, alternatively referred to as HNA, is a neuralgic disorder that is characterized by nerve damage and muscle atrophy, preceded by severe pain. It is caused by a mutation to the gene locus 17-q25 of the septin 9 gene. While not much is known about this disorder, it has been characterized to be similar to Parsonage-Turner syndrome in prognosis.[1]”

I am not sure I understand the implication, if any. But, I understand why my Neurologist was interested in my Vitiligo.

Parsonage-Turner Impacts

There is not a lot of complete information out there on PTS about how it impacts the lifes of those who have it. From my experience, too little is made of the impact this can have on someone unlucky enough to get it- for whatever reason. People see it impact the right shoulder most of the time, and assume it only impacts the right shoulder. People with acute cases and a known one time cause do not appear to have impact elsewhere, so no one looks to see if that is the case with all. They just seem to assume it. If doctors do notice impacts on the other side, they make the wrong conclusions about the cause.

No one who looked at me in the earlier days of my problem even had a clue what this was all about, even after they had agreed with my diagnosis that I had found on the internet. They still assumed that it only impacted my right side, and that I would get better like most patients. Now that I know the overall impact on my left arm and hand, and my legs is a real thing, and not just in my imagination, or my fear, I can think back on my life at the time of my original hand problems and remember details that tell me that this was impacting me all over, even shortly after my thumb and index finger became paralyzed in 2000.

At this time in 2000, I had played guitar and banjo to some extent. I was never satisfied with how I played, but that is a different matter. I had certain things that I could always play, even if I had set the things down for a number of years between attempts. When my right hand became impacted, I tried to play to see if I could still do my finger picking right handed with the loss of movement to my thumb and index finger. Oddly enough, the problem I saw was that my left hand seemed to respond too slowly to make the chord changes. Even with practice, the speed did not increase at all, and my overall ability to make the chords correctly was diminished by a lack of strength. I assumed it must be something like arthritis, even though at that point, my left hand did not feel like that should have been a problem. Maybe it was related to the PTS that I did not know about at that time.

Around that same time, I had been a fairly consistent bike rider, usually in the area of 20-25 miles a week. I know that is a minimal amount for a real avid bike rider, but I am not talking about having been Lance Armstrong. I had a real job, and just rode for my own pleasure mostly on a weekend. My point is that at that time around 2000, my legs would have been in the best overall shape they had been in since I was very young. Yet, shortly after my hand problem started to manifest, I started to notice that my legs became fatigued very easily, and if I tried to do certain things I would have to stop because my legs would start to shake from the muscles being overused. It never occurred to me that anything might be wrong. I never put this leg fatigue together with the left hand slowing down in my guitar playing or linked both of those to my right hand trouble. Why would I have put those isolated symptoms together? I am sure any doctor I may have approached about it would have laughed at me. It was obvious my trouble was only in the right hand.

I do not mean to suggest that anyone else diagnosed with PTS would have my same range of symptoms. For all I know, I am the only one. But, just in case you have noticed some other strangeness in your own PTS that is not related to what commonly occurs, do not just ignore it, or go on blindly believing that no other limb can be part of this. Keep open minded about it.

When my right hand had problems, the weakness in my right arm was attributed to my not using my right arm. Actually, that weakness was due to PTS and the loss of muscle mass and control it contributes to. When my right shoulder became impacted by its own issue, the weakness I mentioned I had in my left arm was attributed to my overuse of my left arm to compensate for the loss of my right arm strength. It really was due to the PTS again showing me that in my case, it has a bilateral nature. When my legs started to really show they were impacted, it was not from physical inactivity. It was the PTS again, showing that whatever the cause of the attack may have been, it did not specifically limit itself to one region of the many plexus areas, and it did not limit itself to only one side.

I remain weak in both arms, and my hands seem to have lost fine motor control. Just yesterday, I had major pain in the right side of my neck. I wonder what that means. I know this seems to be ongoing with me anyway. What am I going to lose control of next?

Merck Manual says this about Plexus Disorders

I just found this in Merck Manual On-line

http://www.merck.com/mmpe/print/sec16/ch223/ch223i.html

“Disorders of the brachial or lumbosacral plexus cause a painful mixed sensorimotor disorder of the corresponding limb.

Because several nerve roots intertwine within the plexus, the symptom pattern does not fit the distribution of individual roots or nerves. Disorders of the rostral brachial plexus affect the shoulders, those of the caudal brachial plexus affect the hands, and those of the lumbosacral plexus affect the legs.”

They talk about acute brachial neuritis and say:

"The most commonly affected muscles are the serratus anterior (causing winging of the scapula), other muscles innervated by the upper trunk, and muscles innervated by the anterior interosseus nerve (in the forearm—patients may not be able to make an “ο” with the thumb and index finger)."

If any one of my earlier doctors had come across this, it may have saved me a few needles trips to out of town doctors, and therefore saved my insurance carriers some money.

All of my answers were here on one site, and I just had not found it. And, if a doctor along the way had bothered to check their Merck Manual for "Brachial Plexus Neuritis", they would have been refered to this page on plexus disorders.

Good catch, but wrong diagnosis- My Second Attack

Six years into my first recovery, I started to notice something was feeling odd in my right shoulder. When Workman’s Comp closed my initial claim, I asked what would happen if I had a relapse, or a continued problem in my shoulder. I was still working after all, so I knew the chance was that I could injury my arm again. They said, whatever happened would have to be on a new claim, and that I should try to pay attention to my arm to catch any additional problems quickly. Because of this suggestion, when my arm started feeling “off” again, I did not waste any time. I alerted my boss. True to any work place, I was told to stay on the job, and let him know if it changed. And change it did.

This started as a sluggish feeling around my right scapula. This by itself was totally different than before. What followed was very similar. I got extreme pain in my upper arm, and when I say pain- well, you have to experience this to appreciate it. It was the most intense and lasting pain episode I have ever endured. When I finally got up in the morning after a night of sitting up on the couch trying to find a comfortable way to sit, and then not moving except to take more ibuprofen, I could not lift my right arm. I rested it over the weekend, and went to the doctors again on the following Monday. They said- what else, tendonitis.

After a week of rest, they said I was fine to go back to work. A few weeks after that, they discovered my scapula was now winging. For the uninitiated, this happens when the muscles that normally hold the scapula against the body allowing it to move as needed for shoulder movement, for whatever reason fail to hold it any longer. The result is that the shoulder blade moves as you try to move, and droops out of place when it normally would hold firmly against the body while at rest. This causes pops and snapping as you reach for things, and possible muscle pain for the couple of muscles that are left holding normally- abnormally stretched as they may be. My clinic doctors had no idea what this was. I, on the other hand, went home and Googled the following; “Winging Scapula” causes.

The internet is our friend. I found a page that gave 4-5 typical causes for winged scapula. After looking at them, only two seemed probable. One was Parsonage Turner Syndrome, and the other was facial-humeral-scapular muscular dystrophy. I quickly ruled out FHSD because the description of the order of the symptoms appearance did not match my own. I also found a study that had been done on people with winging scapulas generally, and found that two of the fourteen or so in the study also reported a problem with the thumb and index fingers of their hands. Next to those comments, the study referred to “Parsonage Turner Syndrome” as a cause. One of those links got me to “False Anterior Interosseous Syndrome.” This must be what I had earlier. Instead of two different rare things happening to me, it was only one rare thing happening twice. I brought up to my doctors what I had found, and no one had ever heard of it. That was as far as it went. You might think one of them would take the time to look it up as I had done. But, I know doctors do not like to be shown up. And this would have been a major snub at them.

Along my trail of doctors trying to figure this out, I had a Physiatrist whose job it was to give me an EMG test. He found nothing wrong with my nerves, but suggested that I might be checked for FHSD since he noted that my left scapula was not as tight as it normally should be. He also stretched a couple of other symptoms that I either did not really have, or that were not really on the list of FSHD symptoms to justify his diagnosis. It was not his job to diagnose me anyway. In general, I thought he was nuts and did not pay any attention to what he said about my left scapula. As it turned out, he may have really seen a problem there anyway. But, no one, including my other doctors, took him seriously. FSHD was soon ruled out by the specialist that this Physiatrist recommended. This specialist agreed with me that I had Parsonage Turner Syndrome. I again pointed out to my other doctors that this was exactly what I had thought and what I had said months earlier. Still no one seemed concerned about my left side.

Ah, the left side. Everyone thinks this only happens on one side for some reason. I was always concerned about my left side, if for no other reason; my left side had a lot of extra work to do in those times. If I could not do it just right handed, I helped with my left. If my right hand could not do it at all, it was done by my left. I was worried about my left side just giving out from being over worked. Still, every website suggested it was only one sided. Why then was my left arm feeling so weak? The doctors thought it was from overwork. Yep. The right arm is weak because you do not use it enough, and the left one is weak because you overuse it.

My most recent trip to a Neurologist was for a final evaluation of my Workman’s Comp claim. I had already been to one who suggested my problem was not work related as far as a cause, that I had no lasting problem, and that I should be able to lift up to 35 pounds. Who did he examine? It must have been someone else. I would gladly have attempted to lift 35 pound box if he agreed to sit under the box I was lifting. This guy had originally claimed he usually referred people with my problem to a University Hospital. Luckily, he was very late with his final report, and I was allowed to throw out his findings due to his failing his timeliness standard.

The re-exam was with a different Neurologist. This one not only knew what I had, but he had done papers on it while he was working at a University Hospital. (Hey, I wonder if. . . No, probably not.) He saw my right side was not improving. He saw that PTS was also impacting my left scapula, and I was surprised to see also my left hand. And, checking my reflexes on my legs, he told me that I also had impact to my legs. I had feared that, actually all of it. But, having him verify it explains so much. Didn’t the other one test these things? I thought he did, but like I said, the first guy must have been looking at someone else.

So, whatever you find about PTS only impacting one side, it may be more involved than that. PTS not only impacts the brachial plexus, but it can also in rare forms, impact the lumbar and sacral plexus, impacting the lower body and legs. And it can be on both sides. I guess I hit the jackpot. I should have bought a lotto ticket when this hit.

How did all of this start for me?

Initially, I had what I thought was a work related repetitive motion problem. I had pain in my right upper arm that lasted for a number of weeks. It eventually made my biceps weak, and I had trouble for a while using my right arm to do anything. I should have gone to a doctor right then, but having been raised in a family that did not drop everything and run to a doctor at any sign of a problem, I just put it off. The pain eventually did stop. Or, it at least moved. The next stop for it was in my forearm, a few inches up from my wrist. That tenderness that developed there is what lead to my first lasting symptom. One morning at work, I tried to pick up a pen and realized that my fingers could not grasp it. I could move my fingers just fine, but the tips of my thumb, index and middle finger seemed to be paralyzed. Hey, Wake up! That got my attention in a hurry.

As I said this happened at work, and since I had been doing almost three times the usual workload as far as mouse clicks and intense schedules, I really thought this was a work related thing, and I hoped it was only temporary. I went off to our approved worker’s compensation clinic. They thought it was tendinitis. They were wrong of course, but if I had stuck with that diagnosis, they at least would have taken me off of work for a few days. That rest may have helped. But, they sent me to a hand specialist, i.e. Surgeon, who looked at my hand as I tried to make the “OK” hand gesture, and told me that I had a classic case of Anterior Interosseous Nerve Syndrome. He told me that if I felt I could still work, I should continue. It was a text book case of AINS. I was impressed about how much he knew about it. But, as it turns out, the one thing it appears he did not know, was that the best treatment for it was rest. Why was that? I already have said the answer. He was a surgeon. He wanted to fix me, but his fix involved an immediate tendon transfer operation. He told me I was way too old to have any return of function without surgery. I decided to wait it out anyway since even the surgery had no guarantee. I was only getting older anyway, and there was no age limit if I eventually decided to get the surgery.

This was a good decision as it turned out. I was just getting older anyway, so the waiting was easy. I worked my fingers constantly for two or three years trying to keep the tendons limber. I did it is downtime. I did it watching television. I did it when I was walking around at work. After two years, I got a burst of nerve sensation in my index finger. A month or so later, I could move the finger fairly easily. Then I got some movement back in the thumb. That is still the tough one. It takes real effort to get it to move at all, and there is almost zero strength in it. I figured I had this beat. It was only a matter of time before I could go back to this surgeon a number of years older still, and show him how well my fingers worked. My body had other things in store for me. As it turned out, as good a match as AINS was as a diagnosis, it was not the correct one. I still had weakness in my right arm. Doctors thought it was from lack of use since I had the hand problem. They were wrong about that.

What is Parsonage Turner Syndrome?

This is an affliction that affects 4,000 to 5,000 people per year in the US.

As diseases go, that is nothing. But for those of us that have it, it is enough. OK, I am not talking about any life threatening process here, or am I? Who really knows? There doesn’t seem to be a lot of real interest out there in studying something that appears so mild and attacks such a small number of people. And those who do get the problem, all 1.6 per 100,000 new people per year, Hey, they all get better within 5 years of the initial attack.

The thing is that is not really a rule that is set in stone. If you look at the websites that talk about any one of the number of synonyms for Parsonage Turner Syndrome, they will have a number of things in common. After all, most of the sites are just re-publishing results from the same couple of studies. They start out saying this is a rare cause of shoulder pain, and then in the same breath say it is very common. And, they suggest that most people recover fully in the first 5 years.

This site http://www.healthline.com/galecontent/parsonage-turner-syndrome is pretty good-

“Parsonage-Turner syndrome (PTS) is a rare syndrome of unknown cause, affecting mainly the lower motor neurons of the brachial plexus. The brachial plexus is a group of nerves that conduct signals from the spine to the shoulder, arm, and hand. PTS is usually characterized by the sudden onset of severe one-sided shoulder pain, followed by paralysis of the shoulder and lack of muscle control in the arm, wrist, or hand several days later. The syndrome can vary greatly in presentation and nerve involvement.”

And then from the same site:

“PTS, also known as brachial plexus neuritis or neuralgic amyotrophy, is a common condition characterized by inflammation of a network of nerves that control and supply (innervate) the muscles of the chest, shoulders, and arms. Individuals with the condition first experience severe pain across the shoulder and upper arm. Within a few hours or days, weakness, wasting (atrophy), and paralysis may affect the muscles of the shoulder. Although individuals with the condition may experience paralysis of the affected areas for months or, in some cases, years, recovery is usually eventually complete.”

Here you have the common problem with this. How can it be rare and common? Also, note the “unknown cause”. For someone trying to figure out a diagnosis, that is a hard thing to get past. The doctors will want to know a cause. And there are a few things that can cause this. Causes can be bacterial or vial or infections or parasitic, surgery or trauma to parts other than the shoulder. There is also an even more rare form that is caused by a defect on chromosome 17. This usually impacts younger people and has the difference that it can impact right and left sides of the body and can recur. Generally this runs in families, and should be easier to point out. Hey, I have this, and my son has it. It must be the chromosome defect version of PTS. Since my first real attack came when I was in my later 40’s, I would not be a good candidate for this. I do not know of any family member who also has the problem, but my family has never been real good at going to doctors, so any history I have is not as complete as it may have been otherwise. There are a few stories I have now heard, but nothing can be confirmed.

One thing to say here is that PTS can be confused with other neurologic conditions, and if you suspect you are a sufferer, you should verify the diagnosis with a qualified and knowledgeable doctor. Hey, this is a rare condition after all. It took me five or six doctors (including two neurologists, and a neuro-muscular disease specialist) to nail the diagnosis down completely, and that was after I pointed the initial doctors in the right direction.

My official diagnosis now is Auto-Immune Parsonage Turner Syndrome. Well, that is what it is today. It could also be the one with the chromosome defect. Since I have no verifiable family history, I would have to have a test run. That has not been suggested yet. Both of these seem to have recurring attacks on either side of the body. I had not mentioned my recurrent attacks, or the fact it is impacting both sides now. As I recall, my PTS has always been on both sides, I could just not get anyone to agree with me. You see what little information that was out there suggested it only happened on one side, one time, unless you are so way out there that you have the genetic defect or autoimmune system as cause. Doctors usually do not like things that complicated, so they look the other way or try to say that this is all in your head.

My most recent visit to a Neurologist verified that I have involvement with my left and right sides, although my right arm and hand is much worse, the weakness is to both sides. He also verified something that I have only rarely encountered about PTS- that I also have impact to both of my legs.

I also want to point out- since I see it listed in the sponsered links from time to time- "Turner Syndrome" is in no way related to "Parsonage Turner Syndrome." If you ever click on those, do not expect anything related to what I am discussing here.