Do I have CIS or PPMS?

[econ1216]

I have a single lesion on my brain seen through an MRI.  I have a 3 on the Oligoclonal Banding test (the other spinal tap tests were negative).  Although the MRI was done 4 months ago, my symptoms have existed and progressed for the last 3 years.  At first it was just some burning on my gums on the left side of my face. The burning grew over 2 years. Then some dental work was done on my right (not left) side and then there was a burning pain there and the tooth would hurt if I talked (but nothing dentally wrong).  Then work was done on my left side of my face (where the burning was) and then the pain exploded (but again, nothing dentally wrong).  During this time (the last year) I also started to feel some stinging on my legs.  Furthermore, my muscles would twitch on my legs all day long (but I could still walk fine).  But this twitching ended when I started to work out about 4 months ago (aerobic exercise), and hasn't really returned.  More recently I developed severe burning and stinging in my legs, arms, hands and feet. But that has kind of gone away (perhaps with the new medications that I have been taking).

[econ1216]

Thank you for your comment.  Yes, I am being followed by a neurologist.  Can you tell me how often I should get new MRI's done to determine if it is getting worse?

[essdipity]

I agree that you seem to be getting ahead of yourself, since you have no diagnosis. CIS actually isn't even MS, because there's no 'multiple,' and perhaps there never will be. For your sake I hope so.

You say your symptoms never go away, yet from other comments you've made, some of them do. So if you do wind up having MS, it's not PPMS, where the disease only builds, never diminishes. But your doctor would be the one to make this call after observing you for a year or more.

What does your doctor say about your symptoms? Was your thorough neurological examination abnormal in any way? What has been ruled out? What is she watching you for? If you don't know the answers, ask her! It will be up to her to order future MRIs if she thinks the situation warrants it, so that's really out of your hands unless you go to a different doctor.

So right now you're in a holding pattern, which can be frustrating, as I well know. But also remember that there are a lot of neurological disorders, so don't zero in on MS or anything else until there's sufficient evidence.

[johnsam]

I don't know what to make of things, but I wanted to say that like you I am experiencing burning in my hands and feet. I do not have peripheral neuropathy or small fiber neuropathy. Normal brain MRI. Had cervical spine done and no lesions. I hope to get more testing done asap. Sorry for your suffering.

[immisceo]

I think you're asking the wrong question. It doesn't sound as if it's been confirmed that there is anything neurological going on here. You don't mention the results of any neurological exams. There are many reasons for lesions to appear on MRIs, some of them completely benign. You also don't mention if those o-bands were unique to the CSF or found in the serum as well.

Of course, it's possible that what you experience is connected, but it doesn't sound like that's been established yet. So asking if you are dealing with CIS, RRMS, PPMS, etc. is extremely premature. This can be a long process. Fixating on specifics this early on will likely lead to a lot of frustration. Once diagnosed, an annual MRI is usually deemed sufficient. In the diagnostic phase, every six months is often typical.

[HVAC]

I would not worry about PPMS. The way it works is it is subtle. Where RRMS is noticeable PPMS is decribed as subtle. It sneaks up on you. It is not diagnosed until at least a year after being diagnosed with MS. It usually is noticed with walking. You notice one day that you can't run like you used to. Then the running is slower. Then you can't run. Then your walking gets harder. It is usually diagnosed in your late 40's or 50's.
CIS just means you have only had one documented attack of MS.
  I have PPMS. My symptoms do not go away once they come they are here to stay. I did not think I had anything wrong with me because the changes were so subtle over time. There was nothing I could point to.
My GP found my MS. I did not go in with a complaint. She did a neurological exam and it was way off. I have the classic MS reflexes and such.

I take it you are being followed by a neurologist. If it MS they will diagnose it sooner or later. Most of us are followed over several years. Few are diagnosed quickly unless you have dramatic symptoms. Neurologists like to watch over time.
Alex

[econ1216]

Thank you for your comment.  Yes, I have a neurologist.  She is watching me.  Can you tell me how often should they do an MRI to determine if it's getting worse?  I've only had one so far.