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Neuromuscular Diseases Message Board


Neuromuscular Diseases Board Index


Muscle atrophy, fatigue... these are the symptoms that have caused my
husband's health to decline rapidly in the last couple years. He was dx with peripheral neuropathy in November and has alot of nerve damage in lower legs and feet that can't be reversed. Doc here has no idea what the problem is and referred him to KU to see a specialist in neuromuscular disorders. He will have an emg @ appt. His calf muscles are disappearing quickly and he is constantly exhausted. He is having a very difficult time keeping the store running.
Can anyone relate to these symptoms? Could this be ALS? Is there anything he can do in the meantime for relief besides rest?
Your input would be greatly appreciated as we feel we are grasping at straws.
Have a wonderful day,
Rhonda
Your Mom is fortunate to have you as an advocate. The first specialist at KU saw Jack in the morning, and he actually ruled out ALS within 5 minutes and ended up coming up with a dx of Duschains sp? Muscular Dystrophy. It is a very rare type, but usually people can live a long time with it. We were elated, until the afternoon came and they did the EMG and they started seeing all these nerves twitching under the skin all over his body like little worms crawling under his skin. He said it was ALS, 99% sure, and we had to go back in 2 months for a final diagnosis by the ALS Nerve specialist, which was slow progressing ALS. She said he was unusual because he is still walking after almost 3 years. // In doing more research, I found on utube pictures of people who walked just like Jack - limping on one leg and then kindof lunging himself forward. Does she do this? John Hopkins is such a great place from everything I have heard. It is hard to understand how they can just keep having her come back when they don't know what is wrong. Has she seen a Neuromuscular specialist? Besides exercise, are they doing anything else for her? Have they suggested she apply for Social Security? How long has she been sick? // I am so sorry your family is having to go through this. I am disabled myself with damage to my Autonomic Nervous System, and was sick 4 years before I saw a specialist who knew what I had. It was extremely stressful for everyone. Just to have a diagnosis is a great relief, no matter what it is. Hope to hear back from you soon and that in some way this helps you.





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