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.
Wednesday, November 25, 2009
Friday, November 13, 2009
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)."
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)."
Thursday, November 5, 2009
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.
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.
Monday, October 26, 2009
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.
(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!!!
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!!!
Sunday, October 18, 2009
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.
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.
Monday, October 12, 2009
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.
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.
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