Welcome, CBo, ask away! Have at it ya'll!

Thanks Cindy!

I was dx'd Feb 2005. After having REALLY bad MRI's I was put on Ty after everything else failed to work. I was doing great on it until Feb 2008. I had numbness in my legs/feet/arm/hand, pain in my legs has been severe, spasticity started, memory loss, depression, insomnia, so I went off work. I was working as an emergency dispatcher...it was just too stressful. So now I'm waiting on LTD and SSDI.

Am I the only person who has been on Ty that has had a relapse? Everyone knows it's a great drug and I am so happy it is working so good for so many, but am I the only one?

Thank you for the kind welcome!

I am glad to hear Tysabri is/was doing "great" for you. It sounds like you are in a spinal lesion attack now . . . did you happen to ignore an infection for too long; teeth?, UTI?, sinuses? . . . that's what always sets mine off.

People on Tysabri are having relapses, perhaps more then some are willing to admit. I know some sooooo.... want to believe it is a "miracle" for them, but I have read of people who seem to "dance" around saying they've experienced a relapse (by calling them "flares" or a "hard time" or whatever) to avoid the real word . You can't really avoid calling it what it is when you are feeling as bad as you are right now though.

Any time we have new or worsening of symptoms, lasting longer then 24 -48 hrs though, it is an attack . . .

Bear in mind, Tysabri never laid claim to stopping all relapses. What it is said to do is reduce relapses by 67%, on AVERAGE, compared to placebo, which equates to:

"The annualized relapse rate was 0.22 for TYSABRI-treated patients compared to 0.67 for placebo-treated patients."

If the average relapse rate for people is somewhere around 1.3 relapses over two years, then Tysabri reduced that to about 1/2 a relapse in a two year period. As we know, no one has 1/2 a relapse, so that must mean some people might have gone down to 1 relapse, and some to no relapses to reach that average.

Of course, many of the people both on Placebo and Tysabri had no relapses, and some had several . . . but overall the reduction, on average is 67%.

Either way, people are still going to have relapses.

Cherie

My Neuro is suggesting Ty for me....how long have you been on it, Cherie? What DMD were you on before Ty? I take it you've had a relapse while on Ty?

I'm undecided as to what I'm going to do. I'm not in any hurry and want to do my homework before making any decisions.

Thanks!

Welcome to NeuroTalk CBo79! You were dx just 8 months prior to my dx. I'm glad you joined the site - there is a large group of MSers here. My Neuro has suggested Ty for me, too, but I seem to be doing fairly well on Beta....I still have exacerbations, though. My right hand and arm has been numb since October of last year - so I'm hoping it's not going to be permanent.

Hope to see you around the site!

No, I'm not on Tysabri herekitty . . . I was just trying to assure CBo that it should not be "unusual" for people to experience relapses even while on Tysabri.

I have only ever done LDN (3 yrs), over this past 17 yrs.

Cherie

There have been many people on Tysabri that have had exacerbations while on the medication. Tysabri may work well for many people, but not for everyone. Have a discussion with your neurologist about alternatives as soon as you can.

-Vic

Thanks for the responses! I am just worried because 1) I did ignore an ear infection and 2) was having a stressful time with DH which caused me to go into therapy. I don't know if I have any new lesions and disability denied me because my last MRI in Dec. 6 months of being on Ty was good (no new, none with contrast). It's time for my year MRI and I am actually hoping it's bad so the disability people will believe me that I'm having problems. And hopefully with this new neuro-since my last neuro really (blanked) me over.

Stress will cause a psueo-exacerbation (symptoms will go away when trigger is removed), but is not proven to cause a real attack. Ignored infection is known to cause attacks though, at least for some of us.

You definitely need your neuro/specialist on board when applying for disability of any kind. The main consideration is whether you can do your job, or if accommodations can be made so that you can work in another position (or even company). My company accommodated me by letting me work flex-time from home for two years, but when it got to the point I couldn't do that any more either, disability was the ONLY option left.

A person has to be dependable to be employable. If you can't handle stress, are too fatigued to think clearly, are having attacks that inconvience your employer too much, etc. then you have good reason to not try to continue working.

I think things are easier to prove in Canada (where I am), but I have heard that Americans should hire an attorney to try to get SSDI. If you talk to one, he may be able to give you tips on LTD too. I found the MS Society here a great resource for helping with the paperwork.

Cherie

Hi Crystal!

I answered your post on the Tysabri thread but I wanted to give you a hello and welcome down here too!