Still in denial after 13 years.

[dyin_myelin]

"The findings were not classic for multiple sclerosis. No change since the 8/25/2011 exam."

This would make me do a double take too. Maybe it's co-morbid with some other disease process and the MS is quiet? I don't really care about other people's MS narratives (the ones where they know someone with MS or of someone with MS), but my friend teaches with someone who's wife had MS for twenty years. Best neuros, etc. He said she was thin like me, hair falling out, a little crazy, and they just told her she has Sjogren's instead. Very weird.

[AriD]

I always ask my neurologist if she's sure it's MS. The first one I saw kept going back and forth about my diagnosis which left me always wondering. I had convinced myself I didn't have it since things were relatively quiet for a few years. Last couple have been difficult but that "suggestive of demyelinating disease possible small vessel ischemia" still kept me hoping I didnt have MS. My last neurologist told me straight out. You have MS no question. She wanted me to accept the diagnosis so I could move on, be compliant with meds, and be prepared for what could come.

[rdmc]

You know, I never really asked or wondered if my neurologist was actually looking at my films. She does not specialize in MS, but the guy who first dx me in 2001 does. Then, I was seeing a doctor who is my age and has MS herself. She DID look at the films.. even showed me the lesions.

For years there was never any doubt, based on the MRIs. But then when I started having them done at a different center the reports started saying that the findings were not typical of MS. So, you can see why I am kind of confused and why I am questioning all this. Maybe it's just the wording they are using.

I did ask my neuro last week about this and she seems certain this is ALL MS! But I do have tendinopathy, osteoarthritis, osteoporosis, Graves Disease, lumbar and thoracic disc bulges and Spondylosis. So..... the pain can be coming from all directions. I suppose the treatment is pretty much the same for all of it. My Rheumatologist is, thankfully, not pushing new meds on me. He knows I react strongly to anything new.

Anyway, it looks like some of you have had the same kind of "mental" denial going on that I have been going through. Thanks so much for all the advice and replies. Keep them coming guys!

Hi Marti,
Have you ever read this blog post Marc (Wheelchair Kamikaze) wrote about his situation. It's really interesting, entitled the MisDiagnosis of MS. This was written a few years ago, yet his MRI findings remain the same, even as he progression is unrelenting.

http://www.wheelchairkamikaze.com/20...rosis-and.html

My MRIs don't scream MS (except for this one lesion which all agree nails the diagnosis) but supposedly MS is and always has been a clinical diagnosis. So an MRI does not an MS diagnosis make....there are neuro deficits and findings from a neuro exam that can throw just as much weight to the diagnosis as the MRI.

[Temagami]

It appeared that the MRI was without contrast. Having contrast may paint a different picture. I was also told that the lesion pattern was not typical- but still got the dx on LP and EP.

[marti]

I keep reminding myself about all the strange symptoms I had for years before being dx based on my first MRI. And yes, I questioned why contrast was not ordered this last time. Anyway, my neuro called to make an appointment to go over the MRIs, the dx and the change in DMD. Since I had the chills, fevers etc 3 times in the last year I was told to stop buying Copaxone. Guess she might want to try something else or just can the whole thing. At 63 I feel maybe it's just time to stop taking shots. Anyway, I should have a talk with her in 3 weeks.

Thanks for ALL the replies and suggestions.

[aisunnen]

Why deny?

I was diagnosed in 2003, and I was relieved. Why? Because I was afraid it was a brain tumor or other death sentence. At the very least I was free to start with one of the approved treatments. As symptoms showed up or worsened, I started various meds to counteract symptoms. Not all helped, and I stopped some; I'm not keen on over-medicating. I'm approaching 70 years old. Things are not getting any better, but I continue to exercise and try to stay positive. What the heck difference does it make if you complain about "Poor me"? a. It doesn't make you feel better, and b. (admit it, caregivers) people do get tired of it. This is a good outlet to rant, absolutely, we hopefully all know what you go through on a daily basis. But frankly, I'd embrace the dx and accept all the support you can get. Does sound as if your better docs are saying the same. Seize the day!

[marti]

I was diagnosed in 2003, and I was relieved. Why? Because I was afraid it was a brain tumor or other death sentence. At the very least I was free to start with one of the approved treatments. As symptoms showed up or worsened, I started various meds to counteract symptoms. Not all helped, and I stopped some; I'm not keen on over-medicating. I'm approaching 70 years old. Things are not getting any better, but I continue to exercise and try to stay positive. What the heck difference does it make if you complain about "Poor me"? a. It doesn't make you feel better, and b. (admit it, caregivers) people do get tired of it. This is a good outlet to rant, absolutely, we hopefully all know what you go through on a daily basis. But frankly, I'd embrace the dx and accept all the support you can get. Does sound as if your better docs are saying the same. Seize the day!

I guess I keep thinking my doctors are missing something that can be fixed. Maybe I should have titled this "Wishful Thinking".

[Thinkimjob]

Hello. Often it can be pretty hard to get a MS diagnosis.

There's no point questioning it. What else is it going to be? Can't be better, can't be worse.

It sucks beyond sucking, but there's nothing you can do about it.