Quote:
Originally Posted by RedPenguins
Hi,
I'm new here - both to MS, being sick, and to these boards (this is my first post).
I was dx with MS on January 4th. I went to a neurologist b/c I thought I had a pinched nerve in my face/jaw area, as the right side of my face had become numb over Xmas - and my dental specialist ruled out that it wasn't anything related to my TMJ problems. I had felt dizzy and had some brief vision problems a few days before I saw neurologist. I seriously had NO idea that I was *very* sick. Neuro said he thought I had a stroke (shocking news since I was just a few weeks shy of my 32nd birthday!). He rushed me for MRI - I told him he needed to get back to me that day - b/c if he left for the weekend without letting me know what was happening, I'd hunt him down...
Well, I guess I put us both in a crappy position - b/c come that afternoon - which was a Friday - the neuro called and said "It wasn't a stroke" - to which I took a deep breath - and then he said "you have MS" - to which I replied "what?" - and then he proceeded to talk for 12 minutes and I was completely out of my body (I checked the timer on phone when I hung up). I think it was the longest weekend of my life.  
Within 48 hours of the diagnosis - I could had complete double vision and couldn't stand up straight, let alone walk b/c I was so dizzy. Everything started moving so fast - nurses to my house giving me IV steroids for 6 days...then oral steroids...then immediately started Copaxone. Doctors will not put me on any of the interferons as I have a terrible history of depression....and he told me from the start that I need to be on Tysabri, but that I needed to try Copaxone first.
Backing up a bit - crazy about it all - since I know so many people have spent years trying to get a positive dx here.....for me - there was a big glaring neon sign on my MRI that says "MS - dont miss me - i'm here" - i have multiple lesions - many active at the moment - as well as many black holes and grey/white spots. Several lesions are greater than 1cm in size...and I have something called "dawson's fingers" which are a hallmark of MS. I saw the MRI on the puter screen - and I still have nightmares from it. The neurologists I have seen have said that the MS was hidden for a while but now it is coming on strong and aggressive and it isn't being shy anymore.
As of Monday, it will be 30 days on Copaxone...and as I confirmed my delivery of the next box of the shots - I realized how badly I want on Tysabri - and is this a waste of time - b/c I know I need to be clean from Copax before starting. When I last saw neuro he said we should wait 3 months before starting Tysabri. I think that is b/c it is hard to get approved or whatever unless you fail the other meds. So I said - well what if I lied and said I had a bad reaction - and he said he couldn't lie...but he couldn't stop me. Meanwhile, two days later, i started having reactions to the darn shots.
The symptoms from the flare-up lessened quite a bit with the IV treatment - but that was 3 weeks ago - and in the last week - they have started coming back stronger - though not nearly as bad as they originally were. I have never gotten any feeling back in the right side of my face/head. Neuro said the steroids take time to work and that an exacerbation can take 2 months to go away.... I've been in this one, I guess, since Dec 22 (when the numbness started).
I'm sorry - I just realized how long this is - I think the shock of it all is wearing off - and I'm beginning to freak out. I had to go get a shower chair and walker this week I sleep a lot - though I take something for the fatigue (provigil - though it doesnt do enough even at 400mg a day). I feel like a piece of dead wood most days. I hate having these limitations - like if I do one errand a day - then I'm toast. My brain shuts down and I can't function anymore.
I guess the point of this is - why am I waiting to start Tysabri? I'm so NOT afraid of the risks - and I know it isn't a miracle cure - but the docs gave me such a bleak prognosis - I want to start this now and get going. I know copaxone is probably not strong enough for what I need - and I can't risk the interferon treatments. Should I start pushing my neuro to get me on Tysabri now and not wait the three months?
I'm feeling like a wreck. I feel the depression creeping in - I don't know if I'm strong enough to fight this all....
Glad these boards are here....and I certainly hope someone read this.... (sorry so long)
Thanks,
~Keri |
Yikes Keri!
Your story sounds like mine, in where the flashing sign sits there and yells "I'M HERE!!"
I too had the sudden onset of symptoms, and within a month my neuro started talking about Tysabri. I was scheduled for my first infusion March of '05. Two weeks before my infusion, Tysabri was withdrawn from market.
I started Copaxone in March '05 and remained on it until Dec. 06. Tysabri was returned to market in June '06. I had serial relapses and ongoing damage. Within that time my neuro had moved and Tysabri returned to market. It took me months to find another neuro and get the prescription for Tysabri.
I started Tysabri in May of '07. To date I have had NO relapses, my MRI shows no new lesions, no enhancing lesions, several large lesions "12-14mm" have either greatly reduced or disappeared. My annual vision tests were extensive and thorough. No damage now shows anywhere on my optic nerve, a scotoma( blind spot) I had on my R eye is gone, my eye muscles are under MY control, all my colors are normal and my 2003 prescription for slight nearsightedness remains in effect with NO changes.( I couldn't see well with those glasses for a year!)
In my case, if I'd had the Tysabri from the start I would have more than likely never had to go through the hell I went through until I was infused.
I'll take the 72% of patients who remained relapse free for two years, the 83% of patients who remained disease free for two years, the 67% reduction in EDSS progression after two years, the 10:1 ratio of Lesions placebo/Tysabri after two years, etc etc etc.
Time is Brain. Your body, your choice. Your disease, your choice.
Whatever you choose, we are here to support your choice.
