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Going off Rebif. Misdiagnosed 7 years ago. Have A.D.E.M.
tjs29790 posted:
Hey All. I just found out this week, after 7 years on Rebif, that I have been misdiagnosed. It was an A.D.E.M., not MS. Off Rebif this week for the first time in 7 years. Has anybody else stopped interferons after such a long run? What can I expect to experience, if anything? I assume I'll feel better in general since i won't have the flu-like symptoms. It's kind of crazy that I have been on something for 7 years that I didn't need! But I am grateful for this good news. Thank you.
hackwriter responded:
Dear tjs,

I am curious to know why your diagnosis was changed to A.D.E.M. after seven years. Have your symptoms totally resolved since your first attack and follow-up MRIs shown no new lesion activity?

From the little I know about A.D.E.M, it usually presents shortly after the patient develops a viral or bacterial infection which is shown to have directly affected the brain--rather than the infection triggering the immune system to attack myelin, as in MS. Symptoms of both diseases are quite similar, as are the test outcomes.

As far as Rebif is concerned, going off it is safe; many people discontinue it when they suffer side effects such as painful injections, elevated liver enzymes, seizures, and depression, and they move on to other therapies. I stopped it after only four months, I did not tolerate it well. I moved on to Tysabri but stopped that, too, after a year. I'm doing fine.

I'm not sure why you feel that the A.D.E.M. diagnosis is good news. I hope you'll fill us in on the details of this new diagnosis in case someone is reading this post who is facing a similar situation.

Thank you for posting about your situation, it has raised a lot of questions in my mind and probably in others' minds as well. I hope we'll hear from you again soon.

tjs29790 replied to hackwriter's response:
Hello Kim,

Thank you for your posting. I will provide more details. In 2006 (age 35) I was admitted to the hospital in CA with very high fever, confusion, exhaustion, and some problems on my right side (mostly right leg) .All of this came on very suddenly. Fortunately a good friend came to visit and saw that I wasn't acting right and took me to the hospital. By the time I got to the hospital I was limping, completely out of it and had trouble answering basic questions. I was given an MRI which showed frontal lobe brain lesions and a spinal tap.

So now they had to rule out the possibilities of meningitis, hotchkins lymphoma, AIDS and I believe I was tested for 150 different diseases. All tests came up negative. After a day or two my fever went away and I was on fluids and doing fine over all, although feeling quite weak and tired.

So by the 8th day, a team of neurologists decided that I most likely had a case of MS which was "revealed" by this random fever/virus. However there was 1 neurologist who was adamant about my not having MS. He said it was some sort of encephalitis that caused these lesions. There were actually arguments between the two neurologists. They did another spinal tap, this time with more spinal fluid, and determined the levels of myelin were significant. In the end, 3 of them wanted to err on the side of caution so we went with MS. I was given prednisone drip, sent home with a 10 day prescription for prednisone, and prescribed Rebif.

So my story for many years has been "had I not gotten that random fever to reveal the underlying MS, I wouldn't have found out for years, after more lesions.." etc. etc. Subsequent MRIs in late 2006, and then again in 2010 showed a dramatic decrease in the size of the lesion. In fact the October, 2006 MRIs showed that the initial large appearance of the lesions during the event was partially due to some swelling, and that they weren't as big.

For the 1st year I still had occasional issues with my right leg. It would feel "lighter" than my left if that makes sense. But over time that went away. I'd say by 2 years, nothing. Also I never had any other symptoms of MS. So I became this sort of lucky case...put on Rebif so early, progression slowed, doing great, symptom free, etc. The 2010 and again in 2011 MRIs were just of the brain and the neurology office told me "looks great" so I just continued my Rebif therapy and was somewhat on automatic pilot with them. They said I only need to come in once per year. When I moved to Washington, DC. I eventually decided to switch to a different neurologist that was closer to me. So I asked to be referred to the Johns Hopkins Multiple Sclerosis Center. I had an excellent experience there each time. The doctor immediately suspected that back in 2006 I may have had a 1 time neurological event that mimics MS (ADEM). And as you mentioned, it has very difficult to distinguish between the two initially. He said that I may be part of the 5% of people who come off of Rebif but we needed to do extensive MRIs.

Last week I spent over 2 hours in the MRI machine and it came up completely clear. Nothing there anymore. No lesions whatsoever. They did the highest magnetic setting possible, full brain and spine, with and without contrast. So I was told to stop taking Rebif immediately. We will do a follow up in 6 months.

I think my initial diagnosis was reasonable, given that it *could* have been MS. I do wish that I had been reevaluated sooner, perhaps a few years ago. Also it is a little weird to think I may have been taking something for 7 years for no reason. I have to laugh a little, because in retrospect the reason why I was "doing so great" was that it appears that the lesions were healing up and unrelated to MS. But that is all in the past now. I never expected the good news of a completely clear MRI, and also to be told to stop taking the Rebif.


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