On my mind. . .

So anyway getting back to every little pain and soreness. . . From the start of my Oct 2006 event, I have had a pain in my mid-back area on the left side. It is about at the base of the rear ribcage area. It has been a tender spot in the years since my right scapula went south (literally). Doctors have assumed (since they know nothing of the bilateral tendencies of NA or the fact that it can involve other plexus sites) that the soreness was simply due to my body trying to rebalance itself against the losses of my right side. What has changed recently is that this tender spot is not just noticeable in movement. I feel a general ache type sensation on the left when I take a deep breath. Glancing at imagery on the web of the diaphragm location, it is at least a possibility that this tender ache type area is at least close to my diaphragm since I see that the diaphragm takes a dip down as it nears the back of the ribs. It may also just be a sore muscle that is aching now because I am taking more deep breaths that usual. Anyway, I guess if it is just a sore muscle my question would be as to why it has not gone away in more than two years. This is just another weird thing I may not ever know for sure.

One other thing that has bugged me for a number of years is my left hip. Back prior to either of my more recent events in 2001 or 2006; I had a sore left hip. In fact it was one reason I chose to get an automatic transmission car in 1999. It was just getting too hard to use a clutch with my left leg getting harder to move with ease. This also has not healed since. There have been times it felt almost better, but recently it has seemed to slip a bit. I have to lift my leg into the car. If I stand too long, it feels like my leg is just being dragged after me. I have a bit of a limp going when walking now. Some have noticed this and asked if I have leg pain. No. There is not real pain most times. It just feels weak.

Are either of these related to HNA? Since they have not healed I have to think they must be related. It bothers me. It makes my temper short. And that bothers me more. But, I do not look sick. That is all that matters to some. And I guess that bothers me even more.

Is Social Security Disability in your future?

This is something I had not considered at the start of my NA/HNA journey, but after the three attorneys I consulted during my recent Worker’s Comp process were surprised I had not already applied, I thought it worth mentioning.

One thing that you should know is that the social security folks seem to need to know that more than one limb is impacted for them to agree you are disabled by anything. That and you have to demonstrate that this impacts your ability to perform basic tasks that might be associated with paying work or just everyday living. To show this, it is important to document everything that has happened to you so you can demonstrate how this impacts your everyday life. Documentation is the key in this. My documentation amounted to a good inch thick stack of paper reports and doctor notes that go back almost ten years. They also have a list of all of the doctors I have seen and when I saw them. Social Security is free to contact the doctors you provide information for, so it is possible that their complete list of documentation exceeds what I have at this point.

That documentation should refer to impacts you have on more than one limb. The right arm by itself is not enough. The right leg alone is not enough. But if you can show that both arms are impacted or that you also have leg involvement, you will have better chances of your claim not being rejected out of hand. If a doctor anywhere in your past ever made note of a different limb being involved, make sure you have a copy of that in your file. In my case, the original mention of my other arm being involved was important, even though the conclusions this doctor came to ended up being incorrect. In my case, there was another doctor who mentioned that involvement later, so I have two independent doctor notes about other limb involvement. What made this difficult for me was the Workman’s Comp system. My claim only mentioned my right arm. When I brought up the potential that my left arm was involved, they said they could not look at it unless I filed a claim for it. At that point, I was tired of the system and it was only a minor issue to me, I decided not to file a new claim. But it was important enough that two other doctors made note of it. Do not discount those fleeting mentioned items. They could be the difference in being denied or not.

Not an end, just a pause for now

Well, as any of you know already, pain sucks. But, for a change, it is not my pain. I still seem stable for now as far as that goes. One who is close to me is not so well off at this point. I am in the recently odd position of having to help someone else with fairly basic adult daily living type things, and I am glad I can still do this. And the person I am helping now has a deeper understanding of what I have gone through the last ten years or so. The jury is still out as far as the issues being faced.

As I said, I am stable. What that means is that I am still weak. My shoulder blades still are winged. My right thumb is still basically worthless. But as I may have mentioned, if my right hand was stronger, I would still be unable to lift much with it at this point.

I have to wonder about all of the websites that suggest that NA/PTS only usually impacts the right shoulder. Yes, that would mean that the causal agent can determine right from left, and up from down. Yes, the agent that causes PTS/NA knows that the right side is the right side and the left should be left out of the attack. And while we are at it, it also knows to stay out of the other plexus sites. No need to go there. It is too far away to matter.

Well, in my case at least, the causal agent is just not that smart. Sure the left shoulder is not impacted as obviously as the right, but the weakness is exactly the same right to left. The weakness goes into my lower back and upper legs. There is not anything obvious down there to be winged as the scapulae do, but that does not mean the nerves are not being impacted just the same. Most websites suggest that not only should my damage be restricted to my right shoulder, but also that I should have recovered by now. That does not seem to be happening either.

I have to wonder what my occasional need for super deep breaths might mean. Is my phrenic nerve also compromised already? For the most part I am breathing just fine. But in certain positions I do find I have to take an extra deep breath every so often. I know people who are on oxygen due to PTS. Is that in my future too? Maybe I am good for now. But what about the next attack that is sure to come in the next few years? Just like the killer earthquake that the San Francisco area is bound to have at some point, I am waiting for my next attack.

I try to stay physically strong, but how do you exercise muscle that has no nerves to fire it? In my brief returns of strength, the muscle still works, and seems to be able to get stronger as long as it works. But then, it disappears again and I return to being weak. I have always been thin. I guess it is time to give up on ever looking any different.

Good bye for now. I hope you all are doing better than I am, and maybe you will be able to recover as the websites suggest you will, at least on average. I guess I have never really been average. No reason to change that now.

I will be back at some point.

Be well. . .

Strength gone again

Just now I am back to around 5 push ups.

I am curious if anyone else with PTS by whatever name you know it- has this sort of fluctuation in strength. My doctors will not discuss it, which is just as well since they do not understand anything about it.

Timolol and strength update

Well, it has been a bit more than a week since I have stopped the beta blocker eye drops, aka Timolol. The theory is that they may have either caused or exacerbated my tremor and muscle weakness. The timing suggests at least a probable cause enough to be suspicious.

Initially, I felt that my fine motor control was much improved, and the few twitches I have had ongoing appeared to have stopped.

But then I had to go and spoil it all by attempting to do a bit of yard work today.

Trying to lift things is still a problem. But, overall my lower back and upper legs felt much stronger than they have in previous similar outside work. My hands, particularly on the left, still tremor after any exertion. At one point I had my left hand resting on a board trying to hold it steady, and it was shaking quite a lot. I just tried to work through it.

During the work period, I had a few instances of just not knowing how to proceed. I am not good at building things anyway, but this was a fairly simple thing to attempt. I am not sure why things like this seem to happen. I guess there was a symptom for confusion listed in the Timolol. And I also know that can happen for magnesium deficiency. It has got to be the Timolol unless there is still something else at work here other than NA and its associated weirdness.

I got to a point, I just had to quit though. It was not quite done, but I was at a point that going on would have been prone to my making mistakes, and some of those could be dangerous when weakness takes over while using power tools. My shoulders were done. I could feel my scapulas trying to hold my shoulders stable- and it hurt a bit. Now I have trouble reaching my arms out away from my body. I may have over done things.

But I also just did 30 push-ups with only minor shaking towards the end.

Another blunder- What What else is new? Tremor and many other symptoms may be side effect of eye medication

Some of you may remember from earlier posts that my latest official bout of NA hit in the end of 2006. By the early part of 2007, I was having the start of eye pressure increases. After a few tests, I was given a prescription for Timolol. In the period after this, I noticed that I had tremor and fatigue that seemed to go beyond anything seen discussed for people who are recovereing from an attack of NA.

When I went to a Neurologist to see what the tremor was caused by, I told him that I was taking Timolol to control the high eye pressure. He prescribed Propranolol for the tremor. I asked him if it was a problem if I was already taking Timolol, since I knew they were both beta blockers. I knew to ask- He told me there was no problem.

Info on Timolol interactions from http://www.medicinenet.com/timolol_ophthalmic_solution/article.htm

“DRUG INTERACTIONS: Combined use of oral beta- adrenergic blocking agents, for example, propranolol (Inderal), atenolol (Tenormin), metoprolol (Lopressor) or carvedilol(Coreg) with ophthalmic timolol can result in additive effects. Thus, patients may experience excessively low blood pressure or reductions in heart rate.”

Note, it says “can result in additive effects” if Timolol is used with Propranolol. Who knew? Further down it talks about side effects of Timolol.

“SIDE EFFECTS: Ophthalmic timolol can cause irritation to the eye which may manifest as pain or dryness in some people. Rarely, timolol eye drops can result in side effects that are seen with other oral beta adrenergic blockers. For example, persons can experience fatigue, insomnia, nausea, slow heart rate, low blood pressure, cold extremities, and shortness of breath or wheezing.”

From another site http://www.drugs.com/sfx/timolol-side-effects.html

“All medicines may cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome when using Timolol Gel Eye Drops:

Blurred vision; dizziness; dry eyes; feeling that something is in your eye; headache; increased tear production; minor burning, itching, or stinging of the eye; nausea.

Seek medical attention right away if any of these SEVERE side effects occur when using Timolol Gel Eye Drops:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); chest pain or discomfort; confusion; eye irritation, swelling, pain, or discharge; eyelid pain, redness, scaling, drooping, or swelling; fainting; pain, numbness, weakness, or tingling of an arm or leg; severe or persistent headache or dizziness; shortness of breath; slow or irregular heartbeat; swelling of the hands, ankles, or feet; vision changes.”

It goes on to add among others, vertigo and tinnitus, both of which I have had since this all started. I have also had quite a few of the others at various times, always blaming NA for the ones not directly related to eyes. My new Eye Doctor asked me if I had any tremor, and when I said yes, he asked about exercise intolerance and depression. Here I thought all of my troubles were either from NA or that maybe other doctors had missed something obvious, and a lot of this could be due to my eye medication. It is no doubt a good thing that I stopped the Propranolol on my own. It may be my tremor was caused by its cousin Timolol.

Needless to say, he took me off of Timolol. If I truly need eye medication in the future, there are others without the mess of side effects.

Another cycle of improving strength?

Well, maybe I am about to start a new phase of improving strength again. I am not even going to hope it will last. More than likely it will not. The last few times I tried to do any push ups I was only able to do 3-4. Just now I was able to do 12 before having to drop to my knees. And now the next day, I have done 15. We shall see. I do not want to push myself to fast.

Over all the weakness is still worse now than it was a few years ago. I have sagging skin around my right bicep at the elbow joint. It does not look like how I remember my arm. I doubt I will be able to strengthen it enough to fill it out again. When I look at my right arm in a mirror, I can fully see the tremor of the muscles even without applying any tension.

Weakness, and tremor, and shaking. . .

From what I can see out on-line, and what I see in reports for my blog site, shaking and tremor of various kinds does happen with those of us attempting physical exercise while recovering from PTS or NA attacks. This generally is not covered specifically in sites I have seen, but there are enough general searches by my blog readers to suggest it is somewhat of a concern, and I have decided that it makes sense it would be a problem.

With PTS, you have something attacking the major nerve plexus sites in the body. If it is a big enough attack, you get the most severe symptoms everyone knows about. But, PTS/NA is not specific in the nerves it impacts. How would it determine only to attack the nerves that would lead to a winging scapula? The other nerves of the plexus sites must also be impacted, but maybe just not at the same level. It stands to reason, in my thinking anyway, that there can be ongoing weakness of the areas impacted, just as there is to the most obvious impacted areas. This weakness is caused by damage to nerves that serve other muscles through the body. If the nerves can’t fire effectively as they normally would, you have incomplete contraction of the muscle and this causes fatiguing of that muscle, leading to shaking of the larger muscles and tremor of the more fine controlling muscles of the hands and fingers.

For me, I have a recurring pattern of weakness followed by improving strength for short periods. But, the regained strength does not last. That may be normal also, depending on the way PTS is triggered for the individual. During the strong periods, I have normal strength and no tremor or shaking. As the strength wanes, the tremor and shaking returns and increases again. During this time, effective exercise is severely limited. It is hard to exercise when the muscles stop working. I may have said parts of this before, but you have to attempt to exercise once in a while to keep up on the cycles. During a strong period, exercise works and I think it is good to do it then to try to regain all you can in what may be a very short burst of normal or at least close to normal strength.

A better way for Scapular Pushups

My Physical Therapist originally showed me how to do scapular pushups to help strengthen and stabilize my shoulders. I never felt that it did much the way I was shown. Here is a bit more advanced way to try if you want.

http://www.youtube.com/watch?v=ALzFr2GT-Is

Updated Magnesium withdrawal update

First, I had noticed a bit of tension in my arms and shoulders, which seemed to add to my jittery nature a bit. Then I realized my temper had shorthand down a bit. I should warn those around me prior to experimentation with changing magnesium dosage or stopping it completely. Then it was shortness of breath.

Breathing is important after all, and if you already suffer from NA, you are sensitive (or I am anyway) to any breathing changes. Why? If you do not already know, NA can impact the cervical plexus in some instances. The cervical plexus is the place where the phrenic nerves originate and then travel down to the diaphragm. If your phrenic nerves are involved in a NA attack, you can have loss of some diaphragm function. Now, it could be that I already have some losses, and taking the magnesium away just made my function worse than normal. Or it could be a coincidence that for the few days I was off magnesium, I had shortness of breath to the point it disrupted my sleep. The more this goes on, the less I believe in coincidences.

So, I started the magnesium again, and my breathing was back to normal. Well, I still had to take a pronounced deep breath once in a while, but with the magnesium, I could do this. Without it, I was gasping at times.

Magnesium deprivation experiment

Since my strength has dropped off again to similar levels as a few years ago when I could only do a few pushups at a time, I decided to stop the magnesium supplements just to see what impact if any, it is really having on my overall condition.

This is the start of the second day without the supplements. I really do feel a difference at least as far as tremor goes. I notice it in both arms and both hands, although the left side seems to manifest this a bit more than in the right side. I feel as if the base level of static tension has increased in both arms. Movement in general is impacted. Although I am not sure anyone else can see this yet, I feel a bit more wobbly even walking. I have not noticed any increase in the random twitches I had earlier on. The muscle shaking of before has also returned, but that had started when my strength dropped off- I had noticed this when trying to do pushups recently.

Conclusions so far- My strength return of before must not really have had anything to do with magnesium since it dropped off prior to my stopping the magnesium. It must have just been a coincidence that my strength returned at a time I had started taking the supplement. Tremor definitely is related to magnesium intake for me since this has increased noticeably. It is too soon to say how the twitches will be impacted.

Parsonage Turner Syndrome Revealing Lyme disease

http://neurotalk.psychcentral.com/thread72131.html

Maybe my friend who suggested I should be tested for Lyme disease knows more than I thought she did about this topic.

The above link is one of many links to a paper (Wendling D, Sevrin P, Bouchaud-Chabot A, Chabroux A, Toussirot E, Bardin T, Michel F. -Service de Rhumatologie, CHU Jean Minjoz, et EA 3186 -Agents Pathogènes et Inflammation- Université de Franche-Comté, Boulevard Fleming, 25030 Besançon, France) suggesting that NA, AKA, Parsonage Turner Syndrome, has been linked to Lyme disease. The abstract suggests that four patients, who were reported to have NA, were later found to have contracted Lyme disease. One had said they knew they had been bitten by a tick, and all four showed positive for Lyme disease. It concludes that tests for Lyme disease should be performed in all patients who have Parsonage Turner Syndrome.

Back to five

Now, all of a sudden I am at around 5 push-ups again. I don’t get it. Evidently. . .

So, what is this now? I have to wonder if there is something else going on other than NA. This fluctuation of strength is just too odd to fit NA.

Anyone have any ideas? Do any of you with NA or HNA have similar fluctuation of overall strength in areas not impacted directly by NA? I mean, I would not expect my scapula or hand to be strong now. But other areas I think should stay about what they are considering I have been trying to keep up on other strength.

Neuralgic Amyotrophy - Where I am now

Just a short update- I am about as stable as I guess I am going to get for now.

Whether the weakness I on occasion experience is related to PTS/NA or not, magnesium (chelated) does help.

Whether the twitches and tremor I feel is related to PTS or not, magnesium helps keep that bearable also with no further drugs (i.e. Propranolol).

My weakness is stable at this point. I dropped in my pushups count from the 30’s to around 20 at this point. More magnesium may help get more strength, but I have to limit it at some point. I am not made of money and if I up it too much, I am sure the chelated effect will be overcome and I will cause more digestive problems than it is worth. My shoulders are too weak to pick up anything heavy. Of course, my lower back being as it is now does not help. Oh, and my upper thighs- it is all related to being able to bend and lift. . .

Doctors I know do not want to pursue my case. Hell, Doctors I do not know do not want to pursue it. I recently contacted a doctor here who I had been told was the only doctor in my area to test for and treat Lyme disease. I tried to get on with him as a new patient, and was told he was not interested in taking any patients for Lyme disease. I never told them I had it- just mentioned I had some similar symptoms but did not know what I had. I may have said this before, but I think there are too many doctors who just want to keep it all simple. Insurance companies do not want to take on “unknowns”, and doctors are really no different. I think that is one reason my most recent doctor visits ended as they did. Whoops- I did not find anything concrete that I can either throw pills at or operate on and cut out of you. That being the case, insurance will not pay for a series of tests that cannot be justified. Therefore, I will give you a medication to control the obvious physical symptom without worrying it is caused by anything more severe- nice and neat. It looks good in your chart to be neat. And your insurance will pay me for it.

I guess in order to find out more about the causes of these other possibly unrelated symptoms (unrelated to PTS?) I will have to be in worse shape. I guess in the TV show House, you have to be almost killed by incorrect treatments to find the correct diagnosis. In most real life situations, you just have to keep records of how symptoms progressed over time so when you are near death’s door you can tell the doctors who try to treat you how this all started. And they will no doubt say, “oh, if we had only caught that sooner. . . “

Lyme disease and magnesium deficiency

Long ago, a friend suggested that I may have been exposed to Lyme disease, and maybe that was why I had the symptoms I have. Well, I went to a specialist and filled out their screening tests information, and they did not find any suggestion of Lyme disease in my responses. But, there is a bit of evidence to support a link between Lyme disease and magnesium deficiency. I Googled “Lyme disease magnesium” and came up with this site among many others.

http://www.lymebook.com/lyme-disease-diet-and-supplements-vitamin-a-b-c-magnesium

From the site related to magnesium and Lyme disease:

” Magnesium: Both Lyme and Bartonella significantly deplete the body’s supply of magnesium. Magnesium is one of the most important mineral nutrients necessary for good health, and also one of the minerals that Americans in general are most commonly deficient in. The recommended daily intake of magnesium for healthy people is 400 mg per day, but the sad reality is that the average American gets about half that amount per day. The best nutritional sources include green foods, especially collards and chard (magnesium is to chlorophyll what iron is to hemoglobin), orange-colored foods, nuts, chocolate, figs, apricots, coconut, bran, oats, beans, and legumes.

Most widely known for its ability to support the health of the bones, heart, skeletal muscles, and teeth, magnesium also plays essential roles in the maintenance and repair of all body cells, energy production, hormone regulation, nerve transmission, and the metabolism of proteins and nucleic acids. It also helps to reverse muscular tension and is involved in the functioning of literally hundreds of the body’s enzymatic reactions. A lack of magnesium can also contribute to immune system dysfunction, depression, fatigue, high blood pressure, high cholesterol, gastrointestinal problems, irregular heartbeat, memory problems, mood swings, muscle spasms and twitching, and motor skill problems.

Many chronic symptoms of Lyme/TBDs are related to magnesium deficiency, and the correction of that deficiency can be very effective in relieving those symptoms. For that reason, I routinely test nearly all patients with chronic Lyme symptoms for magnesium deficiency. The problem with blood testing is that the magnesium blood test should be done on the red bloods cells and not the serum. This is because magnesium exists primarily inside of cells (intracellular, as in red blood cells), and deficiency will not be detected in fluid outside of the cells (extracellular, as in serum or plasma) until a very profound deficiency exists. If you can afford it, the best, and also most expensive, test is the blood “ionized” magnesium (performed by most large commercial labs). “

When does a little magnesium lead to more?

I had been trying to use less magnesium, thinking maybe I had been taking too much of the chelated form. And I had been slowly getting worse. My pushup count was dropping to around 10 or fewer. My back was very shaky again.

Today, I doubled the dosage of the chelated magnesium, and started to feel a bit better fairly quickly. So, maybe my assumptions about increased absorption of chelated magnesium should not have lead to a conclusion that a lesser dose was needed. If I take two, I feel better and my pushup count is back up to 20.

You don’t look sick. . .

I have mentioned this before. Whatever the cause of your own PTS, or NA, or HNA, or whatever of the many names this goes by you choose to use, you may not have any outward appearance that you have anything abnormal going on. This can be a problem going to see doctors because they may not really believe you when you tell them how you feel. At least they should take the time to look at you and see that there are actual physical things related to PTS that can be seen that are not right and indications of an overall problem.

Your friends and associates may be harder to convince or deal with. And, maybe you do not want them to think of you as having issues, so you try not to show them how this impacts you. You try to do things that you know you have problems with. Sometimes you fail, and they do see just what the toll of PTS is on you both physically and emotionally. Recently one such occasions lead to a meltdown for me, and a “I had no idea” from a person very close to me who I had thought understood my limitations.

She had told me long ago that I hide the physical limitations of this syndrome very well and maybe that is one reason doctors tend to think I am better off than I am. I am not trying to hide anything. I guess I take it for granted though that someone close to me can always tell when I am pushing beyond what I should be trying to do.

The truth is that PTS/NA is never far from my thoughts in everyday life. Everything I do every day is a reminder of what I have lost, or have had to make adaptations to in an attempt to appear “not sick”. It is true this may not life threatening illness, but it still is not easy to deal with at times. It can be rough on you when you are not able to do everyday things that others take for granted. This can be as simple as not being able to write more than a few words legibly to doing simple chores around the house. Because you can do these things, others can forget you have had to adapt yourself to be able to do them.

If you know someone who is working through this, be understanding.

Comparison of NA vs. HNA

Most websites on PTS limit the involvement to that of the shoulder girdle, and usually suggest there is only one attack. The differences in HNA and NA attack sites are discussed by Nens van Alfen, MD- here:

http://brain.oxfordjournals.org/cgi/content/abstract/129/2/438

“HNA patients had an earlier onset (28.4 versus 41.3 years), more attacks (mean 3.5 versus 1.5) and more frequent involvement of nerves outside the brachial plexus (55.8 versus 17.3%) than INA patients, and a more severe maximum paresis, with a subsequent poorer functional outcome.”

I have mentioned earlier on all of the potential plexus sites which can be impacted by HNA, but here is a distribution found on Gene Reviews-

http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=hna

“While the shoulder and arm are primarily affected by attacks in HNA, other sites that may also be involved in an attack include the following:
• Lumbosacral plexus in ~33% of attacks
• Phrenic nerve palsy in 14% of attacks; may cause orthopnea, respiratory distress and sleep disturbance
• Recurrent laryngeal nerve in 3% of attacks; may cause vocal cord paresis resulting in hoarseness and hypophonia
• Facial nerve or other cranial nerves (rarely)”

While there is a genetic test to determine whether you have HNA or NA, this would seem to suggest that if you have had more than one occurrence of NA, or if you have had involvement of other plexus sites, at least statistically you may have more chance of having Hereditary Neuralgic Amyotrophy.

When is a little magnesium too much magnesium?

Well, I am confused about this myself.

I had started off with regular magnesium and it had helped me keep the tremor and shaking under control quite a bit initially. Then it seemed like I hit a time where it was not helping. I switched to chelated magnesium and that seemed to help again. It may be that I did not really need to go to the chelated form after all. Maybe my body was just trying to tell me it needed a rest from the magnesium. I say this because a few days ago, I again started to shake and have tremors even while taking the magnesium. What the? This time I did the one thing I had not tried the first time. I stopped taking magnesium.

The first day without the magnesium supplement, the shakes diminished. And the bit of tremor I had begun to feel also went away. And the twitching (mainly felt in my fingers this time) also diminished. It has now been three days and the initial lack of symptoms has been maintained. And my strength is about the same- meaning good for this weird period of my life, but not what it was when I was way younger. Why is this? Why is the addition of magnesium a good thing and then it becomes a bad thing? This is when it would be nice to be my own doctor so I could explain the intricacies of magnesium absorption and what needs to happen to keep it balanced.

Maybe it all was a coincidence and magnesium never did help me at all. Maybe I got better on my own and it just happened that I had started taking magnesium at that time. And maybe it was coincidental that low magnesium could have accounted for a majority of the symptoms I had been having. That does seem like a bit of a stretch.

Maybe the level of magnesium in my normal daily food has increased, and the supplemental magnesium just pushed me over the edge to the point it was becoming a detriment. Too much magnesium can also cause weakness and other symptoms that I was trying to get rid of. It is complicated and I guess that is why doctors get the big bucks. Not that my doctors ever suggested magnesium could help or hurt. At the dosage I was taking, it should not have been a problem.

I go back to Myasthenia Gravis (MG). One thing that comes up on websites dealing with MG is that if you have Myasthenia Gravis you should not take magnesium supplements because the extra magnesium can make you weaker than you are already. I know that MG tends to cycle as other immune diseases can, so it may be that when MG is in its full swing, you may be more sensitive to the impact of magnesium. And when the MG has abated a bit, magnesium could help in the lessening of other symptoms.

What do I know?

Added 05/17/2010

I had been trying to use less magnesium, thinking maybe I had been taking too much of the chelated form. And I had been slowly getting worse. My pushup count was dropping to around 10 or fewer. My back was very shaky again.

Today, I doubled the dosage of the chelated magnesium, and started to feel a bit better fairly quickly. So, maybe my assumptions about increased absorption of chelated magnesium should not have lead to a conclusion that a lesser dose was needed. If I take two, I feel better and my pushup count is back up to 20.

My left arm- I feel like I have already seen this movie

All along, I have thought NA/HNA- what is it anyway? Was just impacting my right arm, and most sites agree it impacts mainly the right arm and shoulders. But I always knew my left shoulder was just not as bad. Well, it seems to be changing of late. I had mentioned the ache I had a while back. That went away. But in its place I have been feeling tenderness in the biceps tendon.

This is a weed whacker issue also since I used it just the other day again. During use, and for a couple hours later it was OK. Then the tendon started to become inflamed and my arm was shaking during any use. And I now was having trouble lifting my arm at all. It started to feel all too familiar. And this was not so much how my arm and shoulder felt preceding my winging right scapula, but it was a similar sensation as I had preceding my thumb and index finger problems. And the ache I had also involved my thumb. This makes me wonder. And it makes me feel like I have to be more careful or I will end up with two hands that are not much good.

More on Chelated Magnesium

Here is just a bit more about magnesium and the differences between chelated and regular.

For the regular non-chelated form, I was taking two capsules a day to get to the 600 mg total dosage they recommend. If I take that amount and get a typical absorption rate of 10% for the non-chelated magnesium, I end up with a total absorption of 60 mg and a wasted amount of 540 mg left to cause havoc with my lower digestive tract.

For the chelated form I now have, it has a total of 150 mg of elemental magnesium per capsule. Right off you might think it is a bad idea since you would have to take four to get to 600 mg. But wait. If your typical absorption rate is 40% for the chelated form, you can get by with taking only one capsule to get to that 60 mg dosage. That leaves you with only 90 mg of wasted magnesium in your digestive system. It is still wasted, but it is so much less than the amount wasted with the non-chelated forms.

And there is another difference. With the non-chelated form I always had just a slight residual of symptoms at times. The tremor initially was gone completely, but the twitches were always there just in the background. If I could have done so, I would have tried just a bit more magnesium. But I was already at the recommended dosage and I did not want to push it any higher for obvious reasons. With the chelated form, I am just taking the one capsule a day and it is totally controlling the twitches. And that slide backwards I had mentioned just previous to this entry is reversed. So maybe the absorption is a bit better than 40% or the absorption of my non-chelated form was a bit less than the 10% rate I was assuming.

Chelated is better. Don’t waste your time on anything less than that.

Regular vs. chelated Magnesium

Recently as mentioned it seems I had hit a plateau as far as how magnesium was helping me long term and that maybe I had actually started a slow decline off of that previous level. And as ever I have done in the past, I started wondering why. It occurred to me that maybe it was the type of magnesium I was taking. I was taking just a run of the mill magnesium at around 600 mg daily.

This is beneficial in the short term since I really was down on the magnesium input to my system. But, the type of magnesium at that dosage was also making my digestive system have problems that may in fact have been stopping absorption of other foods, and the magnesium I needed. Enter chelated magnesium.

It turns out that no matter how much my natural food store employees were trying to tell me I had already had chelated magnesium, they were wrong. I just had regular unadulterated elemental magnesium which has an absorption rate of no better than 4% while a chelated form can be absorbed at close to 40%. After the switch, it already seems that I feel better again. In order to be chelated, it has to have it on the label. And even though chelated forms appear to be lower in total dosage, you get more of it.

From http://www.restlesslegsyndromecure.com/cause.html which talks about restless leg syndrome. . .

“Magnesium causes relaxation of the muscles in the entire body including the legs. A lack of Magnesium causes the muscles of the legs to tense up. So the solution is to take Magnesium. Make sure to take a Magnesium that is easily absorbed. Take Magnesium Glycinate or Magnesium that is chelated (the absorption rate is 40%). Do NOT take Magnesium Oxide (the absorption rate is only 4%). Take 400 mg/day - 1000 mg/day of Magnesium being careful to spread it out over the entire day. The Magnesium may cause loose stools since it relaxes the muscles of the intestine. So if you get loose stools just cut back on the dose of Magnesium. The Magnesium will relax the muscles of the leg and reduces the urge to move your legs. Typically, health food stores have a high quality Magnesium. The common run of the mill department store magnesium is magnesium oxide and will NOT be absorbed.”

The other shoulder

Off and on recently I have had things going on with what had been my un-impacted left shoulder. I say un-impacted even though my left scapula does show sign of slight winging. What has been happening is that I feel a dull ache from my scapula that feels like it is traveling down my arm to my left thumb. During these times, my arm is about useless even though the pain is not what I would call bad in any way. At least it is not bad compared to what I know it could be.

So, I am not sure what it means, if anything. I have had no pain recently in the left side of my neck. But, I do continue to have left sided headaches periodically, as I have had since this all started in 2006. I know my doctors would just say it is due to overuse. But, what should I do about that?

On Facebook- Parsonage-Turner Syndrome Support Group

Just wanted to let you know- Maybe I was the last to know- that there is a support page for PTS on Facebook. Once you join Facebook, search for "Parsonage-Turner Syndrome Support Group". Good info, and more people out there to share stories with.

Yard work and no shaking

I have run our weed whacker for the first time this season, and I have to say that I experienced no tremor or muscle shaking at any time during or after the usual circuit of the yard. I even kept going and wound up a 100 foot extension cord wrapping it over and around my left arm, then mowed the lawns front and back- and then cut up some branches to get rid of.

Of course, I did manage to whack my left ankle. this is not a nylon line weed whacker. No. I had to go and replace that with two plastic blades. I always wondered what would happen if I miscalculated how close my leg was to the working end of this contraption. Now I know. Nothing major damage-wise, but I do not recommend it.

So- what tremor? Just add a bit of magnesium, and it seems to be gone- for me at least.

Magnesium Deficiency and H1N1 shots related to Parsonage Turner Syndrome?

I notice in reports that some have searched to find my blog with these queries. Do not worry, that is all I can see about the site. I do not see any information about any specific users. . .

Anyway, about the queries-

Flu shots a cause for PTS?

I have never seen any evidence specifically linking any particular injection to Parsonage Turner Syndrome. But, I have seen that Brachial Plexus Neuritis (one name PTS can go by) has at least been linked to certain injections, among them influenza injections. Sites I have seen do not say injections are a direct cause, but only that in certain cases, the only thing that had happened recently to a sufferer is that they listed having had a flu shot. See this site for examples of causes- if you have not already found it. http://emedicine.medscape.com/article/315811-overview

Magnesium Deficiency linked to PTS?

Magnesium Deficiency is a possible culprit in many diseases as I have alluded to in the blog previously. It does cause overall weakness, tremors and twitching and a general feeling of malaise- like you are just winding down to minimal function. In my opinion, if you also have PTS or NA, or even HNA, the weakness associated with PTS can be additive if you have magnesium deficiency on top of it. It was for me at least. But, as a cause, I do not think magnesium deficiency would be a direct cause for PTS in any of its other names. PTS causes winging scapula and other distinct muscular losses, and may cause a general weakness of the impacted limbs. But, low magnesium would produce weakness all over the body by comparison. Also, once you correct the magnesium deficiency, overall strength improves quickly, along with a cessation of other related symptoms like twitches and tremors. Even at that though, my scapula is still winged, and my right thumb is still partially paralyzed.

Capsules vs. Tablets for magnesium. . . It does make a difference

It seems that the type of magnesium supplement is important as far as how effective it will be. At least this is true for me. I had started out and had been successful using capsules. That is the ones that are a clear material that are packed with powdered form of the ingredients. A couple of days ago, I tried a tablet (hard packed) that also included calcium and vitamin D. After a day of that, I was starting to slide a bit back into tremor and shakiness. I was also getting a bit tense and feeling a bit over taxed again. I switched back to the original capsule form and I have improved again. My guess is that the capsule format is quicker to load into your system because the capsule material dissolves quicker than the tablet. I suspect the tablet was not dissolving until it had passed beyond. . .

Parsonage Turner Weakness-Strength update

Just a quick update about exercises I have been doing-

The last few days of pushups, I have felt almost like I could go beyond 25. Today, I acted on that and pushed it to 30. I have got to think that I have never done 30 at one time before in my life. I know I had only rarely done 25 even in my earlier years(upper body strength has never been easy for me). And, if anyone is concerned I am only doing pushups I am back to 20 sit-ups and walking or doing stationary bike stuff and other daily exercises for other areas.

Prior to magnesium being added to my daily vitamins I had stamina issues walking around the block or biking, and I could do only 8 sit-ups (shaky ones at that). And 20 minutes or so after trying those 8 sit-ups, I could not do even one more. The first time I tried to do sit-ups after adding magnesium, I did 20 and could do 10 more after resting a few minutes. I tell you, this stuff is helping me get back into the shape I need to be in to get my NA ravaged shoulders stabilized.

We know that NA/HNA does cause some weakness, and that this can linger for a couple of years at least. In my case it lingered for around 4 years before I realized I was losing too much muscle mass. There may be things going on here that I do not know about, but I have become a fan of this one supplement. I take a few daily supplements, but magnesium is the only one that I can tell a difference in how I feel if I miss a dose. I would suggest if anyone has more weakness than they think can be attributed to NA/HNA, to try a good magnesium supplement.

How much is too much exercise?

Hey, that is not the real question at all. The question is what happened to the magnesium that I used to get in my diet without the supplements? I have been doing at least 25 pushups daily, and usually with other upper body exercises to try to regain the arm strength I had a few years ago and had lost. I would almost bet money that if I stopped the magnesium supplements, I would go back to being a shaking mess. I am not going to do it. First, no one would pay me anything when I won the bet. And I feel so much better I do not want to stop it just to prove what I already know.

How does this relate to NA? Well, while I had the severe weakness, I could not effectively exercise. Thinking weakness was related to NA made me think the NA is more involved than any website suggests- or more involved than any doctors I had seen who knew NA at all- which is rare. I was convinced the NA was worse than anyone knew, or that I had some other disease that could be life threatening. Maybe that later thing is still true- but that could happen at any time. Wasting away getting weaker was just the start of what could have been the start down the proverbial slippery slope. The weaker I got, the sicker I thought I must be. The sicker I thought I was, the less I tried to do, and the weaker I became. This is all why I jumped into a round of new doctor visits towards the end of last year. Someone had to see what was happening, or I doubted I would be around much longer. Or if I was here, my quality of life would be close to zero.

That sounds pretty extreme, but it was feeling like I was in a pretty rapid slide towards the end of last year. My tremor was worsening. My shakes were worse. I felt weaker doing everyday things. When I felt good exercising one day, I would feel like crap the next day and not be able to do anything. I am convinced that if I had not found that page suggesting magnesium supplements could increase muscle response, I would be in pretty bad shape at this point.

And I owe it all to my doctors. No, actually they did not cure me of anything. But, they were steadfast in suggesting that there really was nothing wrong with me. They proved it. It would have been nice if they could have been better equipped to be able to suggest other things that may have helped, but they are pretty busy with other people who may be sicker than I am. I just needed to slide a bit deeper and maybe they would have taken me more seriously. It is like on House. . . You may want to have a doctor who would take all that time with you and finally cure you in 60 minutes on Mondays at 9 PM. But, I have also noticed that he rarely is right the first few times, and he pretty much has to kill a patient at times to discover what really is wrong with them.

My advice to anyone who is up against a wall with doctors is to not give up. And if the doctors have given up on you, keep looking on your own. There is a wealth of information out here. It might take you what feels like forever to wade through some of it- but the answer you need may be on that next page you look at. But use caution too. There is also a lot of crap out there that is useless. And if you find an answer, your doctor may feel threatened if you suggest it was found on the internet. Get better at using search engines. Refine your searches and look at as many links as you can. If you find something promising, refine your search to include that. You might find your own key that will unlock your answer- or give you something else to mention to your doctor the next time he can spare ten minutes of an hour appointment to talk to you. I now have two things to ask about next time. First, why does magnesium make me better? And is it possible the lack of magnesium in my diet could explain why I got glaucoma? It is funny that the last time I saw my regular doctor; he even suggested to me that it all might have to do with something in my diet. It is funny because if I am right, it turned out to be a lack of something in my diet.

Link to Glaucoma found?

Well, this is not a direct link from HNA/NA to glaucoma, but there does seem to be at least an indirect link between low magnesium and glaucoma. If one aspect of low magnesium leads to blocking of glutamate receptors, which are excitatory neurotransmitters of the central nervous system. It appears that this can be linked to many diseases. The list includes ALS, Huntington’s, MS, Parkinson’s and others. (see http://en.wikipedia.org/wiki/Glutamate_receptor)

On the list is glaucoma, a disease I know I now have, and those others I could have but would rather think I do not. I used to think it was a coincidence that I was diagnosed with glaucoma at around the same time my muscles got so weak. I thought it was from HNA/NA- but now I think this is also from low magnesium- or whatever caused that.

It has to be the Magnesium- but why?

I continue to take magnesium supplements at 600 mg a day, and I am improving as far as my strength goes. And I have had no return of the tremor that had impacted me for the last few years. I have not had any anti-tremor medication. Just now I finished 25 pushups. I did 25 yesterday, and 20 the day before that. All in all my muscle function feels about normal. I have no shakes doing exertion and no lasting muscle fatigue when finished. I have to wonder why this happened. No doctor is interested in pursuing it, and I am about out of insurance to pay anyone. Is this related to NA or HNA?

I know that NA/HNA causes weakness, but is this the type of weakness it causes? If so, why does magnesium help? Maybe something I regularly eat is lacking magnesium it used to have, or something else I eat causes that magnesium to go away somehow? It can’t just be an absorption issue, or the pill supplement would not help either. It has to be a lack of magnesium in my diet.

Magnesium Deficiency re-visited

So- I have been thinking about my tremors and twitches and weakness, etc. especially since my tremors and twitches had gone away. I had failed to mention that during the time they went away, I had increased my intake of Magnesium. A few days ago, my magnesium supplement ran out. This morning I noticed a return of the twitches, and I felt wrong inside. Now I see that it may be that the magnesium was helping. Here is a bit from the web.

Magnesium deficiency from Wikipedia See http://en.wikipedia.org/wiki/Hypomagnesemia Miss-spellings are from Wikipedia.
Clinical features

“Deficiency of magnesium causes weakness, muscle cramps, cardiac arrhythmia, increased irritability of the nervous system with tremors, athetosis, jerking, nystagmus and an extensorplantar reflex. In addition, there may be confusion, disorientation, hallucinations, depression, epileptic fits, hypertension, tachycardia and tetany.”

From that list, I have my share of nystigmus, weakness, tremors, jerking- which I am taking to mean twitches, but who knows for sure? Depression also fits if sleep is disrupted as in my case- I had thought the twitches disrupted my sleep, but maybe it is just a coincidence that I did not sleep well last night, and noticed a return of the twitches. This page it also talks about magnesium deficiency blocking release of acetylcholine, which is the neurotransmitter that is also associated with Myasthenia Gravis.

“The neurological effects are:
 reducing electrical excitation
 blocking release of acetylcholine
 blocking N-methyl-D-aspartate (NMDA) glutamate receptors, an excitatory neurotransmitter of the central nervous system.


Well, I went right down to the store and got more Magnesium supplements. I feel calmer already.

And about those tremors- What tremors? ? ? ?

Man, I sound bitter in my last post. .. .

Well,if any of you have gone through having something that is a bit out of the ordinary as far as a diagnosis goes, you can no doubt understand why. I do not want to be that bitter. If I go back to my doctor again, it will be to do only the simple things any doctor has experience with. He is not an ‘out of the box’ type thinker, and that is what is required here. Or, maybe he would be a better doctor if he had more time. Well, I gotta scoot.

Remember I was recently diagnosed with essential tremors? Of course, I had known I had them but no one would ever take the time to ask me to show them what I did that made me notice them. At least my regular doctor was good for that much. The thing is, they seem to be gone.

Essential tremors do not just go away, or do they? I can’t find any site that suggests they go away without any reason anyway, and most just say it is something you have to live with. I know, I see the ads pop up on this site too, and some of them are about essential tremor cure. I do not want to dissuade anyone from clicking on an ad here but also do not want to seem that I endorse any that show here. I have the ads to pop in for key words in my blog- so they are what they are. My tremors went away totally, with no changes to anything I was doing, or not doing.

I woke up a few days ago without the normal felling of twitches and tremors that still had been there in the mornings when the medication was its weakest. I decided to try a day without the medication- and then another, and another. My hands are steady. I am not twitching. I do not get it. Maybe this was not really essential tremor, but something else that just mimics the symptoms? Who knows? I will ask the next doctor I see whenever that happens.

I am done

At least, as far as my personal Doctor goes, I have had it. He has shown before that he is not quite up on NA, and evidently he is not able to get into it enough to deal with a patient who has it. My problems are all due to lack of exercise. . .

But of course it is never as simple as that. My lack of exercise, even though I have exercised consistently all through this time, is the reason I am weak. And my exercising is the reason I am weak. There is no residual weakness from the NA because of course as we all know, everyone recovers from it within a few years, and I am no exception. The EMG tests I just had prove that. I have had a complete recovery. These guys have been doing these tests for a long time, and they know how to read the results. OK then. But, as I pointed out, I had my last EMG test right after the winging started in my scapula, and that guy also concluded that I had no nerve related trouble. What? No answer for that one Dr know-it-all?

And what about the other symptoms I have brought up to you recently that may not be related to NA? They were conveniently forgotten since the Neurologist found no reason for them. So, I guess I made all of that up. And if I made that up, I must have made the rest of it up too, so we will just not talk about that. Oh, and by the way, I have to scoot.

No. Not me, the Doctor. HE had to scoot. My appointment was for 11:30 am. I was in the exam room by 12:20. I had my vitals taken by 12:35. I think he came in at 12:40 or maybe a few minutes later. I was in my car and pulling out of the lot by 1:00. HE had to scoot. Where was my appointment? Oh, I guess I was waiting all through it, and beyond. No wonder he had no time to talk to me.

Sure, he was running behind. I am happy that by cutting my visit so short, I helped get him back on schedule. I do know one thing. The person he had to scoot to wasn’t in the waiting room yet when I got the call to go back to my exam room. It is nice to be taken so seriously by the person you have entrusted your life to.

So, as I said. . . I am done. No one will take me seriously. No one gets NA, or HNA. And I guess aside from the essential tremor that he actually did see, I must only think I have the rest of it. There is no reason for the rest of it though. So, I must be making it up about my eyes and the other weakness being anything to be concerned about. You see, it just does not feel right for me to be this way. Maybe it is just not far enough evolved yet to be on their radar. They did not see the essential tremor when I first felt it. Maybe this is like that, and eventually it will be enough that any idiot doctor can tell something is not right. Or maybe I am lazy.

All I know is that I am done doing this blog for now. I have nothing new to share on anything that is pertinent to anyone with NA. And my complaining about doctors is not productive for you or for me either.

Say hello once in a while. I am still here, just taking a break from writing for a while.

From pushups to tingles. . .

Well, if you are following this in any way, I had worked my pushup count back up to 20 very slowly, sort of taking my neurologist’s suggestion to exercise but do not overdo it. It still kills me that they think I am weak from not trying to exercise. Anyway, I had gotten to 20 about the time I had seen him last time- whey he told me I should be trying to exercise. A day or so later, I tried and could only do 15. I think those who have been here may already know where I am going. A few days later I tried, and could do 8 or so. Today, I could barely do 5. There you have my attempt at exercising slowly to build up my muscle mass. Yep. Right.

So, the tingles of last week are gone too. They only lasted that one day, and however active that was it turned out to be just a fluke in the overall scheme of things. Or at least, if it did mean anything, what it meant has not become clear yet. I have no improvement of movement or strength. And, I have no decrease of movement.

It goes on. If I can get my last couple of months of insurance straightened out by tomorrow, I have another appointment with my regular doctor to discuss the findings of the Neurologist. The end of next month, this insurance goes away, and I will have to figure out a new way to pay.