Help with stages of MSq

[huff1711]

Sorry I've been gone for awhile, trust me it's been **** for me.  Not much better but I'm in the right state of mind to make things better again. I have one thing driving me nuts though. My neuro who has been the greatest at helping me can't answer this. (not sure if he's unsure or it's beyond his abilities)  but he is sending me to the Ohio State University MS Center to see their doctors. Since everything started with doctors and my diagnosis within the last 8 months or so, my symptoms are getting worse and worse. Seems like every other day a new one pops up, and a few that still haven't left since day one. I can think of about 15 things at the least that has or has happened. Twice I have had an episode that my limbs became extremely numb/tingling, tremors every 10 seconds, and other things going crazy on me. First time lasted about 40 minutes and the other lasted 20 minutes. I'm used to the numbness and tingling cause its an everyday thing, but those times got 1000x's worse. Also it seems it is slower when I walk, and my short term memory is gone. This past weekend I actually left my car downtown  while at a restaurant, got up to leave thinking I had left keys locked up. Walked out and windows were down and car was running. How it didn't get stolen is a miracle.

I haven't gotten an answer from my neuro about what stage I'm in. Just wondering if this much happens this quick with RRMS or any suggestions or comments (ok just any help) would be great. Hope everyones doing well.

Chad

[huff1711]

I've been on Copaxone since November. I couldn't risk all the flu-like symptoms of the others because of work.  Plus having to take it everyday is easier for me to remember it cause I lose track of the days easily when I'm gone for work.

I talked with Lulu and she told me about the new doctor I'm gonna see at OSU. Now if that day would hurry up and come that would be great. lol

[sllowe]

Hey there,

I'm glad to hear your state of mind is pulling you through to this next phase. I hope it's not SPMS, but agree with what has been said, that the RR (albeit it weekly, monthly, etc) would have to give before they dx the next. Also (this is only my opinion) I think you can be left as RR so you can be treated. Did you start a DMD - remind me please!!!!!

If not, if it were me, I'd go w/the strongest (excluding tysabri for now) and go w/Rebif or betaseron. That again, is just my opinion. Don't get me wrong, I think they are all good for decreasing odds of progression, but just feel the interferons have a longer track record and dosing is pretty high. If I were experiencing what you are, that is what I'd do.

YOu sound to me that your in this fight - so know I'm (we all are) right there beside ya!

-Shell

[Erin0313]

Hi! I am so sorry for what you are going through. I have heard that it is a year with no remission also but my mother-in-law has PPMS and it took way longer so who knows.

I have RRMS but am convinced it is SPMS so I asked the neuros. I have had so many relapses in the last 18 months its more like a big huge one. Where's my remission darn it!
Anyway, the doctors told me that I have been under an enormous amount of stress (very true) and that when we stress, we regress. In other words if I could get my life to be less stressful then I wouldn't be one big ball of MS problems.

I'm working on the less stress but that's a challenge.

Good luck
Erin :)

[huff1711]

I've heard it takes a year, but just wasn't sure. I had thought originally that things would gradually show up over a span of years. Not all of it happening this soon. Just really caught me off guard and more worried as to what and when things are going to happen. Everyday I pray that it doesn't happen to me at work. If it does I don't know what to do because I won't be working anymore at my job.

[essdipity]

Nice to see you again, Chad. It sounds like you're going through a great deal, and I'm sorry for that. What medications does your neuro have you on?

To the best of my knowledge, doctors won't diagnose PPMS until a year of unremitting symptoms has passed. I hope that's not what you have but it may be too soon to tell. It's good you're being sent for a referral. We have a lot of Ohio members, many of whom report satisfaction with the OSU MS doctors. I'm sure some will see this and chime in.

Please don't be a stranger. Good luck to you and let us know how things go.

ess