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CB1977

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This is a good one for wright but anyone feel free to comment please. For Myostitis and Polymyositis, the symptoms seem like something that could easily be mistaken for ALS for anyone who had it and is trying to self diagnos over the internet.

Some of the symptoms, according to what I have read, are muscle weakness, neck and throat muscles are involved making it hard to swallow, can effect chest and lung muscles making it hard to breath, pain, tenderness, very high CK level. Causes can be certain pharma drugs, trauma, genetic problem, viral infections. Diagnosis is biopsies, physical, EMG, and others. This is treated with steriods.


Has anyone on this site that initially came thinking they might have ALS ended up with this? If so, can you shed some light on how you were finally diagnosed and by what type of specialist?

Thank-You

CB in Ohio
 

awieleba

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my nuero thought this could be what I had, or MG. She said my biopsy and emg showed that I dont have polymyositis. If you are looking to see if someone thought als but had myopthy, I would suggest going to forum for myopthy and pose that question. You would get some answers from folks who are dealing with it.
 

CB1977

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Good Idea April, thanks. I am guessing that if you have a dirty EMG, that points away from POLY or MYO, correct?

CB in Ohio
 

awieleba

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not sure, my emgs were clean. so, maybe its just the biopsy that ruled it out with the normal muscle enzymes?
 

planningguy

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CB,

Polymyositis does have some symptoms that can mimic ALS, and depending on the individual is often an alternative diagnosis. I've seen it discussed in a few other threads. It's usually diagnosed by a rheum, but as you have already mentioned testing CK levels, biopsy, and EMG findings are common diagnostic tools that may be performed by any doctor along the way.

From what I understand EMG findings are abnormal with PM, but I don't know the details. The rheum ruled it out for me based on my EMG and CK levels (although he did mention that I had only one CK measurement, and no indication if it was after excercise or not).

Its good to see discussions of alternative diagnosed in here. There are dozens of illnesses and disorders than can cause the symptoms that bring people to this forum.

Robert
 

BethU

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Its good to see discussions of alternative diagnosed in here. There are dozens of illnesses and disorders than can cause the symptoms that bring people to this forum.

Robert ... You're right. There really is no place for people with other baffling neuro symptoms to get together and explore non-ALS issues. Perhaps a separate thread for people who have had ALS ruled out but who still suffer from undiagnosed neurological problems would help clarify the discussions.

Or what Tom suggested (icons showing the extent of ALS progression). I thought that was a great idea.
 

crystalkk

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CB,

Polymotisis- on an emg shows myopathic motor units not nuerogenic, but you ususally have fibs and sharpwaves just like ALS. It is a disease of inflamation of the proximal muscles (closer to the body).
Your cpk is usually very high, and your sed rate is high and it is usually confirmed by a muscle biopsy.
It can take a long time to diagnosed just like ALS. Rhuematoligist and Nueroligist both treat it. Usually it is the Nueroligist when doing your emg that suspects it.
 

planningguy

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BethU - I agree that diagnosed status in the profile would be a nice addition. For those of us still figuring out what's going on in our bodies, and many of whom are looking at options other than ALS, it can by tricky to remember to preface comments with "Not being diagnosed." It's funny, for some reason I thought it was shown, but then I realized it was a profile feature.

Crytalkk - That you for the additional info on polymyositis.

Robert
 

CB1977

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Thank-You eveyone for your feedback. I already had 2 meetings with a Rheum, and he never mentioned these at all. I am sort of surprised by this, especially since he discussed with me that my CK level was high. He did say that he is fairly confident that what is wrong with me is not auto-immune, but I am going to call him tomorrow and ask him how he ruled out these 2 things. I had an emg a few months ago, it was clean. I am having another in Dec. This has given me good stuff to talk with my Dr.s about, thanks again everyone!

CB in Ohio
 

CB1977

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Robert...What is your status

Hey Robert, I have been following your case since August. Have you found out anything new or got any closer to a diagnosed? Last thing I saw was that your DR. thought that ALS was out of the picture.

CB in Ohio
 
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