MS? Neck Pain!!

[Talktoshawnna]

About 7 yrs ago woke up w/tingle/numb in feet, next day legs, next day hands. Went to dr. Every test possible EEG, spinal tap etc.. Every test normal except they did find 1 lesion top of spine which left permanent scar tissue thus hitting nerve leaving me numb from neck down- more like the hum of a tuning fork. Was on prednisone for 6 mos- only thing that took pain away. But have limited use of left arm and no individual finger control. Finally pain went away & was told don't diagnose as MS until 2nd lesion. They did happen to find I had low platelets, which I am on weekly treatments for. Been doing fine for 7 yrs & told since so long odds are I don't have MS. Well 6 weeks ago had extreme pain in neck almost at bottom of scalp to left side & went all the way down to shoulder blade. Now it is just the one spot at left side of neck at skull base. Extreme pain, wakes me up when I move in my sleep. Well guess what, MRI came back normal. Pain meds don't work- only prednisone, which I hate! Anyone have this? What do I have? So tired of tests saying normal. So here I am neck pain, low platelets , left arm useless, cannot button, type or anything with individual finger control & numb from neck down for 7 yrs.?....Help!

[Talktoshawnna]

Yes, I'm diagnosed with transverse myelitis. I don't have any eye problems-so I wasn't aware of that. Thank you. I'm sick of pain killers that aren't helping.

It's that it's in a new spot now but not showing up on MRI. I just wish I knew what it was instead of just treating the symptoms.

Thanks for trying!

[maxthecat43]

Welcome to the forum.  I'm sorry that you haven't had any responses yet, but I can explain why.  Many people with MS have trouble with their eyes, so reading a long paragraph can be too difficult.  

I was able to scan through, and I think I got the gist of it.  It seems that you have one lesion in your c-spine that is causing you a lot of trouble in your body.  But so far, no lesions in your brain.  Is that right?  Have you researched "transverse myelitis"?  That only affects your spinal cord.  

Injuries to the spinal cord also can result in a lesion that disrupts function, and causes numbness- etc.

Hopefully, you won't get any more lesions anywhere. Unfortunately, getting a diagnosis won't repair the damage that is already done.  If it's been seven years, it's probably healed as much as it can- but it's possible that you might regain some of what you've lost.  

Maybe the next step is talking to a pain control specialist?  Sorry, I wish I could help more.

Tammy