Hi all...i've been lurking here for a while. No dx...been to neuro ms specialist now for 2 years. Main symptoms for a few years on and off are dizziness/off balance/swaying motion, nausea, fatigue. Had 4 MRI's. Spine is clean, but brain had numerous non-specific white matter hyperintensities. Small white spots apparently on the surface and not in the peri-vetricular region where MS lesions are. Anyway, neuro doens't really know what is wrong, cannot dx MS based on my tests. Said to see him every 6 months for follow up MRI's. MRI stable (no changes) for last 3 of them.
What is scary is that I belive there is something def wrong and I lean toward MS. New symptoms that are coming and going lately are a strange feeling of my arm and legs are not connected to my body...not sure of that makes sense, but it happens every so often and it's really scary. ALso feels like sometimes my arm is really weak and I can't hold a pen for a split second and also my legs feel weak. It also sometimes feels like I won't be able to get up out of a chair or couch, but I always do. I am so worred that one day I won't be able to get up. It's not too bad now, but I think it may get bad someday and I have no dx.
Does anyone get those strange feelings in the limbs? I am so scared these are the initial signs of becoming paralyzed.
FYI, there are other places MS lesions can be found besides the periventricular region although it is true that they tend to be deeper in the white matter. That said, since the time of my dx I've seen a few cases of "atypical" MS.
A few questions...
Is the neurologist you're seeing an MS specialist or a regular neurologist and have you had an MRI of just your c-spine or did they do the t-spine as well? Also, I assume they tested you for MS mimics like Lyme, B-12 deficiency, etc.?
New symptoms that are coming and going lately are a strange feeling of my arm and legs are not connected to my body...not sure of that makes sense, but it happens every so often and it's really scary.
I haven't personally experienced it but I am aware MS can cause the inability to know where a limb is. You know the limb is there you can see it but the limb doesn't feel connected.
If you have never told your neuro about that symptom then please do. It's really great your neuro is following you but sometimes it can help in getting a diagnosis (MS or something else) if you let your neuro know about new symptoms.
Dx RRMS 1985
5/9/13/ Secondary Progressive WITHOUT Progression
Sensory problems are very common in MS, but I wouldn't "Freak out" about becoming paralyzed... Very few MS patients actually come to that stage, and chances are that even if you do have MS that you would be diagnosed with relapsing remitting... which basically means that the symptoms come and go. I used to be relapsing remitting, but they changed it to progressive after my symtoms started refusing to go away, but I'm still fully ambulatory, and you can never give up, and have to keep a sense of humor about everything or you'll end up going nuts... I compare it to the people that watch the stock market... they freak out and give themselves heart attacks because they've lost a few dollars that day... well the next day they might make a couple of hundred... it's the same with MS... some days are good, and some are bad you just have to deal with it as it comes and keep an eye on the overall picture.