Visible Atrophy Without Major Weakness?
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Jamiet
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Nicole,
I am going thru the exact same thing at the moment. The doctors do not see my atrophy, but i'm loosing weight in my limbs and can see the dents in my feet, tender spots in my hands, etc etc. I see it becuase i know myself. They are telling me it's BFS, but the symptoms i am portraying, is getting more difficult to belive by the day its BFS. I've been to 5 neuros in a 3 month span, due to my panicking. One thing i've learned is that Neros will not diagnose unless there is objective signs. Now, they all look for the weakness, of which, i don't have any either, so you and i either have something other than ALS / MND, or we're similar. I've had body wide twitches since the end of Aug. 06.
Do you have chills, are you legs,fingers and other body parts coordinated or are you having trouble at times with your coordination?
What other symptoms are you having, how long have you had twitches?
I am going thru the exact same thing at the moment. The doctors do not see my atrophy, but i'm loosing weight in my limbs and can see the dents in my feet, tender spots in my hands, etc etc. I see it becuase i know myself. They are telling me it's BFS, but the symptoms i am portraying, is getting more difficult to belive by the day its BFS. I've been to 5 neuros in a 3 month span, due to my panicking. One thing i've learned is that Neros will not diagnose unless there is objective signs. Now, they all look for the weakness, of which, i don't have any either, so you and i either have something other than ALS / MND, or we're similar. I've had body wide twitches since the end of Aug. 06.
Do you have chills, are you legs,fingers and other body parts coordinated or are you having trouble at times with your coordination?
What other symptoms are you having, how long have you had twitches?
I have had twitching since Feb. of this year. It is generally every day and can be anywhere on my body. I did not notice my hand atrophy myself. I went to the Dr. because my wrists hurt when I put weight on them and my Dr. sent me to a physiotherapist. The PT noticed the hand atrophy and said it might be from a compressed nerve. That, however, does not explain the atrophy I am noticing in my left foot. Also, I have noticed that my skin is smoother and shinier? Does that make sense? I don't get to see the neurologist until Feb.07 and it feel like forever. I'd just like to go and get an EMG right now to see if these twitches are benign!
Nicole.
Nicole.
Jamiet
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Call the Neuro and get on their cancellation list, your likely to get in alot sooner. Also, do your homework (Call your local MDA and ask), as you need to see a neuro who specalizes in neruomuscular diseases, as alot of neuro's are not very educated on ALS! Your wait time should be the same. Also, the PT should be able to get you in sooner, it's worth a try. I know what it's like waiting, get you something to help. This could still all be due to nerve compression, however, make a list and keep a journal, this way, when you get to the neuro, you don't forget anything. Demand and EMG, MRI, etc.
Riz
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Hang in There
I have not had good luck with Neurologists at all (several). I was first diagnosed with Parkinson's in 2005 and they kept giving me stronger and stronger drugs until I was unable to work. I finally said no more and went to the Mayo clinic in 2006 who took me off those terrible drugs. I was able to return to work but have been very fatigued and also have the same signs and symptoms you have. Muscle twitching everywhere and profound atrophy in my wrists, feet, and back of both hands and tremors. I don't trust doctors at all any more after what I have been through and probably will let this run it's course until it is so obvious to a Neurologist they will finally spin the wheel and get the correct diagnosis. I just don't think most of these folks are very good at what they do. JMHO.
I have not had good luck with Neurologists at all (several). I was first diagnosed with Parkinson's in 2005 and they kept giving me stronger and stronger drugs until I was unable to work. I finally said no more and went to the Mayo clinic in 2006 who took me off those terrible drugs. I was able to return to work but have been very fatigued and also have the same signs and symptoms you have. Muscle twitching everywhere and profound atrophy in my wrists, feet, and back of both hands and tremors. I don't trust doctors at all any more after what I have been through and probably will let this run it's course until it is so obvious to a Neurologist they will finally spin the wheel and get the correct diagnosis. I just don't think most of these folks are very good at what they do. JMHO.
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