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Riz

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Joined
Dec 6, 2006
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Friend was DX
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US
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GA
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Palmetto
Can anyone please tell me if this could be PMA. I have had severe fatigue that comes and goes and frequent twitching for the last few years. I also have an essential tremor in my right hand that gets much worse when I do a lot of physical activity. Now the scary part: I started to get depressions two years ago in the side of my right thumb and then it moved to the back of my hand where it appars the muscle is disappearing and the bone structure is becoming visible. The back of my wrist has a .75" diameter crater and the back of my hand has long depressions or valleys, between the bones that move the fingers, that are oriented in the same direction as my fingers. This has moved into my left hand but is now very pronounced on the right. I have been misdiagnosed with Parkinson's in 2004 and I saw an ALS specialist in 2006 who said it is not ALS either but offered no other advice (very rude doctor). My right hand today is becoming deformed looking and my fingers seem to like curling down and my wrist is much smaller as I can easily wrap my fingers of the opposing hand around and have some left over. Does this sound familiar with anyone? I have lost faith in the medical community and I have resorted to figuring this out on my own. I think I will have to wait for this to become so severe and obvious to a doctor before I can go back.
 
Riz, Ihave PMA. The only fatigue came about after I started taking Rilutek. (I lost 15 pounds after 3 months on Rilutek.) When I stopped taking it, the fatigue went away. I have a depression by the left thumb, not the right. I have never had any pain with this condition. The onset was in March 2007. Since then, I have lost most of the strength in my left leg. I have almost no sense of balance and cannot stand unassisted. I have muscle twitches in both the upper and lower part of the body and what the neuro describes as profound ankle dorsiflexion weakness. I wear ultra lite graphite AFO's, which I put on shortly after arising to avoid the struggle of walking with a cane. Outside I use a rollaltor walker. I also have a Pride Go Go Scooter. I see the neuro, who is director of the ALS Clinic, quarterly. I can communicate with her by e-mail, or contact her primary nurse by phone. I feel lucky that PMA is the slowest progressing type of motor neuron disease.

I hope all this helps.
 
Dear Riz

The last time you saw an ALS Specialist was 2006? :(


If you are thinking you might have PMA, which clearly is a classification of ALS, then make an appointment with a different ALS Clinic neurologist for a consult regarding your concerns/symptoms.

Good luck!
 
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