Newly sick, newly dx
 

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. :( :confused:

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

Keri, welcome to NeuroTalk.

You are strong enough :hug:

There is a Tysabri thread at the top of the MS forum. It's a "sticky" and there are many knowledgeable people who know what the Protocol for Tysabri is but I believe you can choose to start out with Tysabri - http://neurotalk.psychcentral.com/thread37891.html

I'm not too happy about your neuros comment - There is no way to know when or if you will have another exacerbation and exacerbations can take more tham 3 months to resolve. In my opinion it's a little too soon to have a prognosis.

MS is a strange disease. You can be at your very worst with this disease and in time (it could literally be months or more than a year) start to see improvements. This is known as relapsing/remitting. That doesn't mean all of your symptoms or disabilities are gone but that your doing better than you were.

It's very possible to have many lesions with little disability or only a few lesions with more disability. There is no rhyme or reason with this disease.

Has your neuro talked to you about symptom management meds?

Vertigo - http://www.nationalmssociety.org/sit...book_dizziness

Fatigue - I know your using Provigil but here is more information about fatigue - http://www.nationalmssociety.org/sit...cebook_fatigue If your still dealing with an exacerbation that could be why your fatigue is so bad.

Information about the prognosis of MS - http://www.nationalmssociety.org/sit...book_prognosis

You might also consider Physical Therapy (PT) -
http://www.nationalmssociety.org/sit..._sourcebook_pt

HI
 

My Name Is Judy And I Have Ms For 28 Years. Walk Kinda Gimpy But Still Live A Good Life. Would Love To Hear From Others. Boomer Lady

Hey, nice to see ya :)

:D:grouphug:

Hey, Larry, nice too see you too. Where have you been hiding? Did you find *the cure* and forgot to tell us.:D

been hanging out at Daily Strength the last few months

Welcome Judy! I like it - "walk kinda gimpy but still live a good life." This description applies to me too! I've had MS for 20 years.

I think Cindy lives close to you (aftermynap). Like, real close...

Tom

Thanks
 

Hi Snoopy -

Thank you. I'm trying to remain strong right now. Calling neuro tomorrow to ask him to get the ball rolling on the Tysabri. I know it isn't a miracle cure - and I know it takes time - but I don't want to wait to get started.

I will check out all the links you sent. I've read so much about MS and treatment, my head is spinning from that all by itself, let alone the MS. :eek: LOL

I try to keep my humor about me....sometimes I horrify my friends when I make jokes about the holes in my brain....but hey, they're my holes...I can talk about them any way I want to! We're becoming good friends, me, my holes, my grey spots, my lesions.... :p

I'm already "showing up" my neuro. I saw him a week or so after I did the IV/SM - and he was shocked at how well I was doing (not that I was well) - but that I was doing so much better. He hadn't expected such a marked improvement so soon (though he filled me up with 1 GRAM of SM a day for 7 days - what did he expect?!). I told him I had no intention of going down silently - and that he should take the prognosis and rewrite it immediately!


Thanks for responding - it helped me feel less alone. This disease is a lonely one. And a tiring one. :(

~Keri

New too!
 

Okay I had to come on over and join in on all of the fun! I posted this in the main forum before I realized there was a newbie thread here!

I kept the same username from "my old house" hoping not to confuse anyone. (3qtkids)

36 years old, 3 kids, a hubby of 16 years, and... oh, MS for the last 5 years. Only dx'd for a little over a year but trust me it's been around longer than that!

Hope to get some good advice, meet some wonderful people, and join in some lighthearted conversation!;)

Angie

Keri,

I can say I know exactly how you feel. I've been off work since October 15th with what my neuro termed a severe exacerbation. I had 5 days IVSM (1 gram per day) outpatient which did nothing and was then admitted to the hospital and was given another 6 days same thing. The numbness you describe and feeling like dead wood sounds like what I have felt every day. I could not walk for almost a month. Now just going to the grocery store wears me out, never mind a full work day! The lack of cognitive function was unbelievable. I would pick up the phone to answer it and then not remember what I was supposed to say. I would just stare at it like "what am I doing???" I too have had to use a shower chair and stuff just to get by.

I am also on Copaxone which I continued injecting daily through the entire ordeal. Please read this next part with caution as everyone is different. I have read many threads and done research on side effects of Copaxone. Some say yes, others say no - just like with almost everything. But I have read that some have experienced overwhelming fatigue while on it along with sleep disturbances.

I chose to discontinue use of Copaxone one week ago. I must say that I have noticed my energy level seems to be increasing slightly day by day. By no means am I back where I was, but if they say you have to be free of Copaxone for 3 months before you can start Tysabri then maybe that's how long it will be before it's all out of my system.

You are strong enough to make it!! I truly thought I was going to end up in a wheelchair but it's getting better. It does take a lot longer than I thought it would though and that's why I wrote here. I just wanted to give you some encouragement and let you know that it really might take months but there is hope.

Take care and if I can help or just listen, feel free to PM me. :hug: