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mysticunicorn66

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Loved one DX
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MD
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Allegany County
My sister has been to neuro drs and they think she has "something like ALS". One of them put on the medical reports after performing an EMG that he suspected monomeilc amyotrophy. I don't agree with the doctor because even though the muscle wasting and loss of muscle mass is primarily noticeable on the left leg, she is also having issues with the right leg as well. She is also having the muscle twitching all over her body. The neuro dr at a teaching hospital said that the machine was going completely crazy and he has barely started the EMG. When the twitching goes on it is painful. Since 2008, she has gone from dealing with a drop foot on the left side to barely able to get around with a walker to go a couple steps.

Now, she is having days where all of the sudden, like a light switch being turned off, that she loses control/feeling of both legs and even if she can get to a stand with help, its like everything from her waist down becomes like jello. There is no rhyme or reason to this happening and nothing seems to bring this on--it just happens.

I was wondering if anyone who has been told that they have PMA has experienced similar symptoms.
 
My official diagnosis is PMA. This diagnosis is based on the fact that I have had no symptoms of upper motor neuron degeneration, such as cramping, spasms and brisk reflexes. The progression of my weakness has been slower than average, and this is also a sign of PMA. Otherwise, it is essentially the same as ALS.

The loss of feeling you describe is not part of PMA. Nor is the sudden onset of weakness. It is either not PMA or something else is going on. I would suggest that you take her to an ALS clinic or an ALS specialist. I think there are many members of this forum in the Maryland area who can point you in the right direction.
 
Thanks for responding. I am thinking that the drs are not on the right trail. I am thinking it is more likely ALS that she has. I asked her if she was having problems breathing or swallowing. She told me that it is easier for her to breathe through her nose than by mouth. Also, I noticed that she seems to have more issues with choking on thin liquids, like water, for example. Other stuff so far, she does not have a problem swallowing. The neuro dr locally is referring her back to the teaching hospital. Hopefully, they will run some other tests to try to eliminate what the problem ISN'T.
 
I was first suspected of having MND over ten years ago and after a series of tests it was confirmed vaguely. My GP signed me off work and the prognosis was quite gloomy. I was unhappy with my consultant and asked to change. The new consultant was much younger and more positive. I had been signed off work and effectively registered disabled and yet my only real symptoms were confined to my left hand, arm, and left side of my chest. After a period of 'mourning' (I had three young children) I decided that I had enough and would return to work. Ten years on, and the main degeneration is confined to my left hand, which is skeletal and pretty useless. My left arm is visibly smaller than my right. The most significant other symptoms I can report are terrible cramps all over my body that are much more frequent, and the reason that I have just joined this forum. I have to say however that I know I am lucky, but I have always had a positive attitude throughout the illness, in fact I have tried not to even acknowledge it's existence. The cramps have become so painful that I will revisit my consultant, but only in an attempt to get some treatment for the cramps.
Wishing everyone the best, and available for comment at most times.
 
Sorry, I forgot to mention that the new consultant changed my diagnosis from full blown MND, to PMA
 
I, too, have terrible cramps "all over" in muscles. Then comes the atrophy. Baclofen and Nucentra at night have helped, as well as Cymbalta. My best friend, however, is the heating blanket and pad!
 
My husband had a fall due to PMA and has passed but feel free to ask me any questions or look at my posts from 2007 to 2009.
His legs were strong and his PMA affected upper body, arms were useless and the fall was his cause of death or he could of lived many many years.

Patty
 
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