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New member
Jul 3, 2008
Learn about ALS
Hi. I am new to this site, but impressed with how caring everyone seems.
I am 49-diagnosed 5 yrs. ago with progressive muscle disease. My right arm, hand and leg are getting weaker. I have had foot drop for about 3 yrs. Recently, at routine visit to rheumy, told him I am dropping things more than I used to - not all the time but enough I noticed. Also difficulty with muscle jerks - creating problems playing piano etc. Some twitches - basically right side. At the end of the day, feet up watching the tube, if I stretch my foot-cramps in toes. My reg. doc said he is concerned about MS or ALS. Saw the neuro who diagnosed muscle disease - jerking is not part of that. Has ordered new EMG. Seemed concerned, but said would wait for EMG results.

I guess I am just wondering about someone else's experience with symptoms and their progression. Thanks for any replies.

Glad you found your way here. When is your new EMG scheduled for?
You're sure to get some helpful replies soon from folks here. Alot of them are probably eating supper right now.
Good luck.

You say 5 years ago you were diagnosed with progressive muscle disease. I am not a dr but most cases of ALS are much more progressive than that which is a good thing for you. What were your symptoms then and what was your emg results then? Did you have a muscle biopsy back then?

Does your nuero specialize in nueromuscular disease? If he doen't you might want to see someone who specializes in nueromuscular diseases.

Hang in there,
hi jess

the muscle jerks sound like myoclonus,i have this and it is worse in my right side and is an abnormal movement. it is common among alot of neurological desease including pls/als.
you sound alot like me. i have been ill with mainly umn symptoms for 9yrs now,after ruling everything out my neuro said it must be mnd but can not give definate diagnosed of pls or als. but i now have developed bulbar problems with tongue fassics.
ask your neuro about pls if you have umn symptoms but no lmn like atrophy.
how are your reflexes? balance? clonus?. all these point to umn.
take good care
Jess, Welcome to the forum and you have joined a knowledgeable and helpful group of people. I am reasonably new to all of this too.

I have to ask, but what is 'progressive muscle disease'? Is that an actual diagnosis or a statement of what is happening? Where you happy for that as a diagnosis for 5 years? Was that said to you by a neurologist or the rhumy?

I hope you find useful answer here.
Hi Jess,
One of my husband's first differential diagnoses was progressive muscle atrophy. His symptoms were right hand and right forearm atrophy initially diagnosed as carpal tunnel and nerve impingement in the forearm. Had surgery, got worse. Eventually after seeing a neurologist at a neuromuscular disorder unit, he has been diagnosed with CIDP MADSAM variant and receives IVIG monthly. Much improvement to date. He did have foot drop as well last summer--none now. He has had fasciculations and muscle spasm as well. Some things sound similar to your situation. He remains somewhat clumsy and drops things and trips at times.
Hi Jane. It is scheduled for mid August. Thanks for your reply.
Hi Crystal. The muscle disease is called dermatomyositis. It can advance very rapidly, but in my case, it has moved slower which has been a blessing. The concern is that I might have ALS in addition to the dermatomyositis. Dermatomyositis causes muscle weakness, but doesn't affect the hands at all. I have had a lot of muscle pain, but the weakness has developed more slowly. However, about a year ago, I became weaker, and since Christmas the muscle jerks, foot cramps. stiffness and trouble using my hand has developed. When I was diagnosed with DM, they did an EMG that showed muscle damage and also confirmed it with a muscle biopsy.
hi Jess,

Are you receiving treatments for the Dermatomyostis? It makes more sense now that you have given us name of the disease.
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