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Sailor

New member
Joined
May 1, 2013
Messages
1
Diagnosis
1/2002
Country
UK
State
Cheshire
City
Warrington
Hello everyone, Considering the rarity of MN there is an awful lot of people on the Forums with MN/ Als. I am new to this site but I have read a lot of interesting posts, but I have not seen any posts from members who are doubtful about their illness mention "Inclusion Body Myositis" IBM which is what I have been diagnosed with in Jan 2002. I have formed my own opinion that IBM is one of MN, Als illnesses because it is easier to explain to other people who ask me questions. Nobody has heard of IBM. I have had all of the same tests that MN sufferers have, and I have all of the same problems Dysphagia, muscle wasting etc to the point that I am now completely confined to a wheelchair and almost quadriplegic and I can't do anything for myself. My question is, can anyone tell me if my illness is connected with MN?:?:
 
Hi Sailor,

Sorry to hear of your illness. No, I don't think there is any connection between IBM and ALS. Myositis means inflammation of the muscle. IBM is a muscle disease, whereas ALS is a neurological disease. The symptoms may be very similar, but the causes completely different. In a muscle disease, the muscle weakness arises directly from the disease in the muscle. In ALS, the muscle weakness results from the lack of innervation as the motor neurons die.

Grace & peace to you.
 
Hi,

I also agree with Phil on what he posted.

Furthermore, for a definite ALS diagnosis there must be a combination of degeneration on both, the Upper Motor Neurons (UMN) as well as the Lower Motor Neurons (LMN) at the same time.

If only UMN are affected, you get a diagnosis of PLS.
If only LMN are affected, you get a diagnosis of PMA.

Over time, PLS could evolve later and affect your LMN and then it would be reclassified as ALS.
The same with PMA, if it evolves later and affects your UMN, then it would be reclassified as ALS.

The only doubts a Neurologist could have at the early symptoms on both, I.B.M. and ALS is when only LMN are affected in ALS as the symptoms may mimic the former, then that's the reason why they perform EMG, blood tests, spinal taps, muscle biopsies, etc., to rule out a wrong diagnosis.


Hope this helps.


NH
 
Hi, I'm in undiagnosed limbo-land. One of the things that they've mentioned for me is IBM. I know that they say that it is "untreatable" but I found this study off the National Institutes of Health / PubMed website:

A pilot randomized trial of oxandrolone in inclusi... [Neurology. 2002] - PubMed - NCBI

Have you or your doctors considered Oxandralone (Anavar)? I'm trying to get an endocrinologist to prescribe it for me now, while they play the "wait and see" game. The above study looked promising to me. Probably a shot in the dark, but at least it's something.

Paul
 
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