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,
My mother has had similar symptoms. She deteriorated pretty quickly. She's been sick for four years with no diagnosis. They had suggested it could be ALS, Leukemia, among other things. She has gone through many different tests among lumbar drains, CT scans, and two PET scans. I've also noticed her calf muscles are essentially gone. She currently uses a wheelchair to get around, but we also noticed that exercise helps her, she keeps her strength up enough to be able to get around so my father and I can go about school and work with worrying too much. Have you tried exercise with him?
So sorry to hear about your Mom. Jack was finally diagnosed a few months ago with ALS. His is a slow progressing form. They had ruled everything else out over a few months, and then he had and Electromyogram where they stuck needles into the muscles to detect nerve activity. They recommended that he does exercise, but not to the point where his muscles get sore. He just got someone to replace him at work this week and is training him. Has your Mom had this test?
She has. She's had everything. They've said ALS, Parkinson's, Leukemia, MS, she even started the shots for MS. She's has nerve tests, bone density tests, spinal drains, which was painful, among others. We're still at a loss and going along with it. She's seeing a top neurologist at Hopkins every six months, we're lucky to live about 45 minutes from Baltimore. Exercise does help her keep her strength up as opposed to doing nothing, but the doctors have had no answers for us.
The following user gives a hug of support to ssimme1: rrrrrhonda (06-18-2011)
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.
Oh, I forgot to answer your question. Yes they did recommend some exercise but cautioned against overdoing it to the point he would be sore the next day. Right now
he is training his replacement at work - and just being up 4 hours or so doing that is exhausting to him. He is trying to stay flexible by stretching, rides a stationary bike, and then does walk way to much at work. He should be able to stay home and do a few hours of work a day in the recliner, and then just take care of himself.
He has weakness that began in his lower legs, especially on the right side, and after seeing the specialist, obvious it is also in the hands and arms, but just beginning. Still becoming familiar with this jargon, but believe the it is not descending, or starting with the mouth and throat. When they did the EMG, there were abnormalities in the extremities, and also near the spine. He had ripples under the skin in all those areas too.
Her doctors are almost positive now that it is Primary Lateral Sclerosis. They were playing around with the idea for a while. It kind of has to be diagnosed through process of elimination. She goes to see her neurologist again at the end of this month.