I need help please. I thought was getting better, or maybe I should say not worse, but I was wrong. I had my 1st ty infusion on 3-18. 3-19 was a great day. Except for the numbness in my leg I did not feel any MS sx. On 3-20 I got sick and started to have a few ms sx, but they were the same as ones I had before. Well the same old sx came everyday till about Tues. On Tues (I think) I started to get new ms sx. I now have had the tingle deal in my right leg, I had a bad attack with my right hand, and I've about 4 attack with a stiffness in my jaws. I have new heard of ms hitting the jaws but I guess we have stuff there too. None of these have lasted for 24 hours but I am getting new stuff. Also my thinking is not clear and my speaking sucks. I thought I was out of the relapse. Am I or not. Everytime I think I may understand the MS deal I get confused again. If I am out of the relapse, is this the way the rest of my life will be. Please tell me what u think is going on. Is this what you mean by good days and bad ones. Does this mean the ty might not be working on me. My case is so last stage or sever till they tell me the next relapse may take me out. I am so scared. What if this is not the right drug for me. I have no where to go. I'm scared.

So sorry...
 

Sorry to hear you're struggling so much.

Just want to make a few points -

1. As far as I know: Tysabri isn't meant to stop or heal an exacerbation (none of the DMDs do that) though many people report feeling better and lessening or disappearing of sx after the first treatment - however, for some it takes several months of treatments.

2. To help with sx of an exacerbation - usually IV steroids are used. I've had two rounds of steroids in 3 months - I have been in this episode since Dec 22. Both steroid tx helped in the immediate - for 1-2 weeks after...but then my sx came back as well as new ones.
3. There are other tx available if tysabri doesn't work...but I understand your fears - I have them, too. My doc made it seem like ty was my only hope - but the more I read, the more I know that heaven-forbid it doesn't work for me - there are a few other things to try before I give up and call it quits.

I'm sorry you are experiencing new sx - I know how scary that is.

I'm not sure what you mean by last stage and so severe that the next relapse may take you out.... MS *rarely* kills - but yes, your sx could progress to the point of complete disability (bed-bound, etc). I'm not sure how fast that comes on, though, from what I've read it isn't like a train crash - not instantaneous. Also usually the sx need to last at least 24 hrs.... it sounds like you're having spotty sx all around...I have moments like that, too, where I feel numb or weaker in places overall, but it isn't constant.

I suggest letting your doctor know about these sx and ask his thoughts on an IV treatment. It's usually 5-6 days of an infusion - they take about an hour each.

Sheena, from all you've posted - I don't think you're out of the relapse....and from what I have heard from so many people, it is TOO soon to tell if you don't have Relapse Remitting MS. You need to wait and see.... I know, it stinks all around :(

I also wonder/think if maybe all of your sx are stronger right now b/c you are so sick - I know you are on antibiotics - but they take time - and often physical illness makes our sx worse - and can bring them out even when they've been gone (pseudo-exacerbation). I wonder if that is what is going - your body is just sick...and needs to rest and heal.

Just my thoughts from all that I've read. Everything is a time game...sit and wait. It stinks. :(

I hope you feel better,

~Keri

ps/I'm going to try to get to the post office today to mail you that stuff - if not, tomorrow for sure!

Thanks for the post, you don't understand. I have had 2 neuros and 1 GP who saw the mri state they all believe I have had this for years, prob 10 plus. It remained silent or too silent for me to worry about a prob. It distroyed my brain. I am very, very advanced. They all state I have no other choice then TY. If this drug does not work-nothing will help. I can't take steroids and stay on TY. This is my understanding. I don't know what is going on - I just need to understand what is going on. By take me out I do mean complete disability!

Sheena and Keri,

I've been wanting to respond to both of your postings, but don't want to bog down this particular thread with non-information or Tysabri check-in discussions. There are probably others that feel the same way.

You might want to start a new thread. :confused:

Cherie

Sheena,

Sorry your are feeling so bad! I understand about being scared. I think alot of us are. Tomorrow is my one year anniversary from being diagnosed (March 29th). I also did not have any symptoms except a little numbness on one foot which was attributed to a pinched nerve. On my first MRI they discovered several lesions and I also have one on/in my spinal cord. I only am telling you this because my neuro has not suggested my MS is severe at this point even though I have several problems.

I think Keri included alot of important information. If you are sick and on antibiotics it can cause a pseudo flare. You also cannot expect to feel immediately better after your first tysabri infusion. You can also be on steriods while on tysabri although I doubt if most neuro will prescribe them on a regular basis.

As far as being out of a relaspe I really cannot answer that one. I do know now that being in remission does not mean that all of your symptoms disappear. You may have to deal with residual symptoms and some may go away and them come back.

Also tysabri is generally only prescribed for remitting relasping MS so I am also confused about the severity of your MS.

I hope you called your neuro today. If not you should call them first thing on Monday so you can get an appointment.

Barb

Sheena

If you are having an exacerbation, you can have IVSM to treat the exacerbation. The steroids you cannot have while you are on Tysabri is the monthly pulse steriods.

I am not sure who told you that you cannot have steroids and stay on Tysabri, but they are absolulely wrong.

I too am sorry that you are not doing well. It sounds like you need to call your neuro first thing Monday morning.

Take care Sheena...and please call your doctor. :hug:

re: Severity of MS
 

Sheena -

I think you should ask your docs to clarify everything for you. My neuros said the same thing, re: have probably had it for at least 8-10 yrs based on the lesions. Several are completely black holes - no longer grey. And they wouldn't even count the amount - and the size - several were larger than 1-2cms. These don't just develop over night...showing that they've been there a long time.

My doc has said aggressive and progressive for my condition. Also, because of where the lesions are - I am most likely to be "attacked" and disabled cognitively and physically.

As for Ty being your only chance - it's fine and dandy to say that to you - but they don't know for sure until and unless you have tried something else. I know you went straight to Ty. I did copax for 1 month - but went to Ty because my doc said it was my best chance. However, if it fails - well, I'm not just going to give up - there are the chemo drugs and gasp - the interferons. I've also read that some docs are prescribing copax and rebif or avonex at the same time.

I don't know 100% about the steroids and Ty - I think you can receive some high dose steroids for a flare and be okay. Your doc and the TOUCH people should know this info.

Hang in there - and as much as you can, REST, try not to STRESS.... I def think your sickness right now is making everything worse - your body is just freaking out...

Sorry - hang in - feel better!!
And call your neuro's emergency # if you need to this w/e!!
~Keri

I made copies of Sheena last 2 posts and barb02's reply.
I made a new thread with them - for more discussion of her symptoms -
http://neurotalk.psychcentral.com/sh...ad.php?t=42334

Oh you guys are too fast LOL.

I can make copies of the newest replies and place them on the new thread if needed.

Had to have bloodwork again today for liver -- having a few problems (pain in area of liver, slight yellowing in inner corner of each eye -- may have always been there?) Also having IBS problems and I am having an ultrasound of gallbladder tomorrow morning. All of these can be side effects of tysabri. Hope they will have results of blood work prior to ty infusion on Wednesday afternoon. Will let you know what happens. The adventure continues:rolleyes:

Jeez Barb...It's time for you to catch a break! You must feel like a pincushion! Thanks for the update and please let us know how it goes for you!:hug: