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?
Wednesday, December 23, 2009
Thursday, December 17, 2009
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.
Thursday, December 10, 2009
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.
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.
Tuesday, December 8, 2009
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.
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.
Wednesday, November 25, 2009
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.
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.
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.
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