Just had my yearly visit with my neurologist and my MS diagnosis (from 17 years ago) has changed somewhat. I had one exacerbation that lasted several months. Neuro immediately put me on Avonex and life went on as normal.
Several years later, I starting "questioning" by neuro about a conclusive DX and he assured me I have MS. I kept waiting for the ax to fall and it never has.
Now 17 years later and a lot of MS research being done, I understand (I think!) that I may have Acute Disseminated Encephalomyelitis. "ADEM" is caused by (?) a viral or bacterial infection and has a lot of MS markers, but it's still inside the MS "spectrum" - whatever that means! It is an inflammation of the brain and spinal cord.
I guess I was "happy" with the news but the downside of it.....I still have to continue the Avonex weekly therapy! Bummer!
Anyone ever hear of this because I still have questions. Hackwriter/Kim? I'd like your take on this if you have the time. I'm awaiting the neuro's report to see if he wrote something I can truly understand as to what's going on.
Incidentally, I was one of my neuro's FIRST patients to begin an Avonex regimen after my first (and only!) exacerbation.....which was unheard of 17 years ago! He refused to wait until another "attack" occurred and I trust his judgment.....even though I questioned his DX!
Any info appreciated. Have research ADEM online and it's quite confusing. I want things in "layman's" language!!! Thanks!
I'm a little confused by your report that you think you may have ADEM. Is your neuro still unsure? I had to read up on it like you did, and from what I've read, this is not a condition for which an MS therapy would be prescribed or be helpful. It sounds similar to Transverse Myelitis in that there is just one attack, it doesn't relapse and remit. There is no constant T-cell autoimmune assault on the myelin, and therefore no need for an interferon immunosuppressive. If your doc is keeping you on Avonex, maybe he's not entirely convinced it's not MS? I'd want to know more about his reasoning, I'm stumped.
Until I read the neuro's 3-page report, I'm as confused as you are right now. At one point, he wrote down "ADEM" and explained it then he talked about CIS - Clinical Isolated Syndrome.....which is the area that a lot of research has been done over the years.
From what I understand, my MS diagnosis has not followed the "normal" pattern of relapsing/remitting MS over the past 17 years. That's WHY I questioned him about it many times each time I met with him for a check-up!!!
CIS is basically an MS diagnosis but it only appears ONCE, becomes "isolated" and never shows up again. That's why I thought it was "safe" to get OFF Avonex entirely but he wants me to stay on it. Don't fix it....if it ain't broke!
Maybe I can explain it better, once I pick up the report tomorrow. The more I read online about ADEM, the more confused I became. One more reason to quit reading and believing everything on the internet!!! Millions of options and millions more of false information to be found!!!
Thanks for your reply. I always enjoy reading your feedback about different subjects on this site! Thanks again!
Hey Kim - Just picked up the faxed report from my neuro and his diagnosis "assessment" is as follows:
"Multiple Sclerosis relapsing/remitting stable on long-term Avonex therapy; she may be considered to be an individual who had a clinically isolated syndrome that was treated early with disease modifying therapy and she has never developed clinically definite multiple sclerosis. I think she is one of the really lucky few who has had this happen."
NOTHING was even mentioned about ADEM in his report, even though we sat there and talked about it! Go figure! Maybe ADEM was "considered" in the beginning 16 years ago in the MS diagnosis but he's settled on CIS instead.
I guess this is good news....regardless and MS symptoms are held at bay at this point! Thanks for your info supplied.
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