MS clinic and criteria for diagnosing MS - Multiple Sclerosis Message Board

tarapags1107 · 11-18-2007, 03:09 PM

Hi everyone-
Well, I just got the news back from my follow up neurology appointment. He told me that he is referring me to an MS clinic in eastern massachusetts and they can do more testing there. Has anyone ever been to one of these clinics? If so, did you find them to be helpful in obtaining a diagnosis if you weren't allready diagnosed?
Has anyone on this board been diagnosed with MS from a spinal tap alone? My MRI's were all normal and I thought the criteria had to be pretty strick to diagnose MS. And in that case, I don't think I'll ever be dianosed since I've been lesion free for over 2 1/2 years. Right now, my neuro said that I had "possible" not even probable MS. I would just like to know for sure. I mean I have every symptom in the book and the symptoms don't go away meaning that I am probably going to fall into the progressive form of MS which is rare for a 23 year old my neuro said anyways.
I'm wondering if the clinic has more explicit testing that a normal MRI can't show in an ordinary hospital. Any thoughts? He also told me that I could go to Mass general or Umass Worcestor. Worcestor is closer for me but I'm not sure which one to choose. I hope they are of equal quality they are both really big hospitals as far as I know. I guess I'll have to just wait and see.
Thanks
Tara

Pens'nChalk · 11-18-2007, 04:09 PM

Hello Tara,
I've heard that Brigham and Women's Hospital in Boston has a good MS clinic. I'm not sure Mass General has one. Maybe another poster will answer with more information. I wish you luck and the best of care.

tarapags1107 · 11-18-2007, 04:14 PM

Thanks, I'll have to check into that sometime soon. I just want to get the best care so I can get a diagnosis and so possible therapy.

MSNik · 11-18-2007, 04:33 PM

Hey Tara. Just wanted to wish you well on this, wherever you go. Theres really no difference between probable or possible MS. In fact, the terms dont really exist. What the doctor is saying to you, no matter how it is said, is that you have enough for him to think its PROBABLY MS, but he isnt either 100% sure of diagnosing it, or something is off, where he wants additional testing done, which he cant do himself. Either way, if you have what you believe are "all the symtoms" and he has enough to send you to an MS Specialist and Clinic, then you definately should go and get your dx.

Now, about the progressive vs. relapsing remitting. Tara, its highly UNlikely that you have progressive MS to begin with. It could happen, but usually happens in men, not women, and usually only happens after the age of 40- you also havent had ANY MS treatments, have you? No steroids, nothing? In that case, nothing is going to go away.
If it makes you feel better- I have had a tingling, burning hand and fingers for over a 19 months now. It led to my dx a year ago. Ive been on Rebif for a year, have done several rounds of steroids for things like optical neuritis, and other symtoms, but the hand is still the same. Guess what? Just because it never went away, doesnt make my MS progressive...it means that the nerve damage was permenent, and wont fix itself...but my MS is still Relapsing/Remitting. And, in the past 8 months, no new symtoms, no relapses, and still on Rebif and loving it! So, try not to worry about your symtoms. Concentrate on finding an MS Clinic which works for you and can see you sooner than later- because the longer your symtoms go on, without any treatment, the higher the possiblity of them being permenent are.
I cant help you with the wheres of where to go, but I can tell you that an MS clinic both deals with diagnosing and ruling out MS- so that is where you need to be.
I do know of people who were dx only by their spinal tap and they didnt show any lesions on any of their MRIs...its very possible.

Hugs to you.
Nikki

tarapags1107 · 11-18-2007, 04:54 PM

Thanks Nikki-
I feel a little better now but I am still a little confused. I keep reading things like there are no treatments currently for the progressive type and I thought the relapsing MS had of remission where no symtoms were present at all. At least, thats what I've gathered from my own research. I have always had symtoms and they have just gotten worse not any better. How did you find out that you had a form of the treatable type? The only time I felt remotely better was when I was on a medrol pack (prednisone) trial from my immunologist. It didn't last long though because the side effects were worse! Did you have breaks or "attacks" when you were diagnosed? From what I've gathered is that progressive forms generally show less lesions and thats why diagnosis can be more difficult with this type of MS. Hopefully I will be able to have treatment so I can feel like I'm stalling the process and somewhat in control. Thanks for your advice.
Tara