What do I need for a diagnosis of clinically definite MS?

[kdlalib]

Sorry I have so many questions. I'm still waiting for diagnosis and I'm fairly anxiety ridden.

3 years ago I had my first "attack" with evidence of spots or lesions in my brain during 2 separate MRIs. My first MRI had 1 spot and my second MRI had 3 more spots. Because there was less than a month gap, the neurologist considered it the same attack. The neurologist said I had "probable MS" or Clinically Isolated Syndrome. My symptoms eventually subsided. The docs did several follow-up MRIs. My original spots/lesions were still there, but I didn't have any other spots. Two years passed with no symptoms.

Three weeks ago my symptoms restarted with tingling, numbness, weakness and burning and electrical shocks in fingertips. Went back to the neurologist and my neuro exam showed evidence of changes in sensation and sensory abnormalities. I also had a positive l'hermittes sign, which is a new symptom/sign for me. I didn't have this during my first attack. I'm going to repeat my MRI on Feb. 3, which is a horribly long time to wait to get answers.

Sorry for the long-winded background. My question is this, now that my symptoms have restarted what needs to happen for me to be converted from Clinically Isolated Syndrome to Clinically Definite MS? Does there have to be new lesions on the MRI or is that fact that I had a second attack coupled with an abnormal neuro exam enough to get me diagnosed? What if I don't have new spots on my MRI?

I also read that lesions need to be in different sections of the brain to constitute as MS. IF I'm having the same symptoms as before, does that mean if I have new lesions, they'll be in the same brain region?

[Sidesteps]

I am with Lulu -

I am in the same boat...except my symptoms ran one right into the other for nearly a year and half staight. I had three or four obvious flares --- but my baseline wasn't ever *normal* so I didn't realize the difference until I stablized.

I think I am stable now (as does my doctor) but still feel warning signs that my "probable MS" is doing it's thing so, like you, my doctor is repeating my MRI in six months and wants to see me immediately should I flare again - looking for that progression.

I know I should be on medication but she wanted to re-run some labs for the third time and redo my MRI for changes (since I went from a 1.5T to a 3T and can't tell progression.) I have four lesions (one large one and three smaller lesions), she's being cautious since we know it's early in the disease. She's also mentioned it being benign MS. (I don't believe that I think she is trying not to freak me out.)

[zoefromsussex]

I wish I had the answer but it seems like all neuro's have their own way of deciding! I'm still not diagnosed either and like you was told 'probable MS or CIS'...not very helpful when you're the one living with all the symptoms & uncertainty! Have you had a lumbar puncture too? I've had a positive lumbar, abnormal mri's etc but remain undiagnosed.My nruro says new symptoms or worsening of existing symptoms counts as a further relapse. I think new lesions should count but my neuro puts more bearing on the physical symptoms. I know Feb is a way off but you will get some answers in the end. Take care

[Lulu54]

What does it take? It takes a neurologist with half a brain to realize that what you have described and is shown on clinical exam to realize that this is a second episode and you are no longer CIS. It is proven and widely accepted that CIS will eventually convert to clinically definite MS for most people and that is why the FDA approved use of the drugs for CIS.

I sure hope this doctor sees it clearly and gives you some treatment options. Be sure to let us know how it goes.
be well,
Lulu

[bairdy]

hi
i second what alex has said. i waited for a long time for my dx of ppms
but until the jigsaw is put together a lot wont dx even though they know its coming.
hang in there
regards mick

[HVAC]

Hello.The short answer look at the most Viewed Health Pages to the right click on it and the second page has the McDonald Criteria. The long answer is it takes what it takes. I met the Criteria right away including decades of Neurological problems but it took two more years for a diagnosis. The whole time many Neurologists told me I would be diagnosed with MS. They still talk about me as one of the longest diagnoses in my area.

Patience is hard. Some Doctors call it faster than others. No test rules MS in or out. Some day they will have a blood test. Until then it will be tests and Doctors experience for a diagnosis.

Alex