hi dave and hi mrs mole,

glad to meet you.
this is a great place and i hope to hear more about you.

Hey everyone. I recognize some of you, so I will say a special Howdie to y'all.

Yep I have SPMS and now have developed RSD. Fun and games.

I live in southern ontario, female, married with children and 2 cats and one dog.

Live in constant pain, use wheel chair in home, and scooter outside.

Hate neuros, but then again who does not?

Don't know what else to say except: I'm heeeeeeeeere !

Welcome! Love your username and your sig line. Kitty litter! Ha!

Another BIG NT Welcome to our newest members. Take a look around at all our wonderful forums. And, please let us know if you need any directions or help. Glad to have you w/us.

Yeaaaaa, My Friend CITH is here....So happy you made it. She and I started out long ago at BT and then to Plaintalk and then notta, for awhile., so, I am glad you came.

I hope you like it here.

thanks everyone for the welcome.

Yep Sally it's been a long time, but as I emailed U, I'm trying to get back to the living. After my dad died it was very hard to do anything. I miss him so much.

Anyways, I am here, and I hope to get to meet ya'll.

Just jump in anywhere and enjoy yourself..

So so sorry about your loss..

HI I'm Jen (Debbie Downer to some ),

New to this, Have fibro, upper thorasic scoliosis, chronic pain. Take Topamaxx 100mg, Cymbalta 160 mg, and Lyrica 150mg, per day. No side effects but still in pain. What the hell is wrong with me? My back hurts every minute of the day even when I breath in and out. MRIs show nothing ... although I do have a slight pinched nerve in the C5 and a bulging disc in the lower back along with TMJ and carpal tunnel running thru both arms. Help me!!:confu sed:

Woo-hoo! Shalynn's found us too. Glad to see you here

Hi,

I'm new here - both to MS, being sick, and to these boards.

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 jaw started hurting - and my dental specialist ruled out that it wasn't anything related to my TMJ problems. During the week between Xmas and New Years -I felt really tired - like I'd go out for an hour or two and I'd have to lay down - I just couldn't function. I felt like such a bum, a real sloth! I would ask my friends to drive, etc. A couple of times, 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. They doubt I will go more than 3 months without an exacerbation.

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 really getting scared - thinking that the effects of the steroids are gone - and i'm getting worse. Not sure if it works that way - but if it does, I feel really screwed here. (Where can I send my complaint?! LOL)

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 keep saying that if my disability was more physical I'd be okay - but it's very cognitive and brain centered right now - I can't walk not b/c my legs don't work - but b/c I'm so wobbly from being dizzy and the vertigo and not being able to see well. I will be on the phone and on hold with someone - and I'll forget who I'm on the phone with. Now, if I were 60, I'd say, okay...but I'm 32...not so normal!

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