Help??

[kwilliams92189]

My husband was diagnosed about 2 years ago with MS. We have switched medications 3 times because they all seemed to make him sick. We were finally on Rebif and it seemed to be doing great.

We went in for a recheck, and they scanned his neck and spine as well this time. We got some news which we didn't really expect. In just 2 years, his entire spinal cord is covered in lesions. The MD's said they have never seen this before especially in someone who is so young (23) and who hasn't had the disease for that long. They said they expected to see this maybe in someone who had had the disease for over 25 years or so.

They were going to try to talk to some other specialist about seeing what our options may be. Just wondering if anybody else has ever had this problem?

Also we were told that chemo is an option for treatment... has anybody ever heard of this??

I have also been told by several people that Tysarbi is the way to go... but I dont know much about it.

Can somebody explain what you kind of go through when your getting Tysarbi? And some of the side effects you get with the medication? also if you think it is working for you or not?

***Moderator's note - post broken into paragraphs for easier reading. Many people with MS cannot read large blocks of text. ***

[LL60]

Hi Kwilliams-
Welcome here.
There are so many here who can answer your questions better than I can.

Just wanted to tell you that for me Tysabri has been a life saver. But granted my MS is not as involved as your husbands. But I did a lot of reasearch before I started almost 2 years ago.

Chemo has a life span, meaning you can have only so many treatments.

Is your neuro an MS speicalist? Rocky Mountain MS Center in CO is a great place for information. And some others too.

Is your husband RRMS?

Just keep researching, along with your doctor. This is one illness that you have to know as much or more than your doctor does. Because it affects everyone differently. Your doctor may be a MS expert, but your husband is an expert on his own body.

I hope he can find something that works for him. Tysabri works well. With some minor risks. Anything that works well will come with risks. You have to decide what will be best for the two of you. For me there have been few problems, bad headaches the first few days in the first few months .Sometimes I get some bad bruising where the IV goes in. And I use to get very tired the day of. All minor things. I wouldn't go off of it for anything.

[0485c10]

Part 2 of webcast

http://www.youtube.com/watch?v=SA-2c82H8ho

[0485c10]

link to ms page on tysabri

http://www.nationalmssociety.org/abo...mab/index.aspx


best practices for using ty

http://msj.sagepub.com/content/15/4_suppl/S26.abstract

the ty website

http://www.tysabri.com/tysbProject/t...home/index.xml

i've had 32 infusions so far, with no side affects or lesions.

the first few infusions made me very sleepy for a few days, so i think the wort a person can do is schedule a lot when they just want to sleep, causes stress!

then i learned to be well fluidized before my infusion & have something light on my stomach before the infusion and some of the sleepiness after the infusion lessened.

that's the most important thing to do before the infusion drink fluid and don't have an empty stomach.

[0485c10]

Part 1 of webcast--=these are national MS webcasts

http://www.youtube.com/watch?v=vwT8N..._order&list=UL

[kwilliams92189]

Thanks for all of this quick information! We have done research after research since he got the disease, and really thought we were doing the right thing with his medicines, and then BAM this hit and we feel like were completely clueless again.

He is a veteran and has full benefits through the VA. Right now we are seeing a neurologist, she doesnt necissarily specialize in MS. So that is one thing we are trying to change right now. We are trying to get a referral to see a MS specialist to really see what our options are from here. The only thing is, is that the VA can take their grand ol time when it comes to referral's and I just dont feel like we have time to waste... I know that is probably just me being impatient, but I can see day to day changes in him and it just scares me because I feel like we could be doing so much more.

When he was diagnosed he was RRMS, but now he is secondary progressive MS. So in a matter of just 2 years, we have come a significant way. Just another one of my many reasons that I want to speed this referral process along.

I have read alot about Tysarbi, and I feel like it is a good route to go. The only thing I dont know, is if it is effective with SPMS? I cant really find anything that says yes or no to that.

Thanks again for all this response. It helps in more ways than yuo know.

[0485c10]

no, unfortunately ty is only effective in RRMS--it has not been proven effective in sp....but sp is not like an on/off switch..for a while it is RR then it is a combination off RR & sp unrtil it is finally sp alone.

in this peroid of time when it is both RR & SP many people use tysabri.

ms progression is:

RRMS-> Worsening RR->SPMS with relapses still present -> SP with Relapses no longer present.

i put a link to charts showing this along with a table that shows EDSS levels, i understand by SP it's mostly EDSS level 6.

if it's sp with relapses no longer present chemo might be his option now. but if it sp with relapses still present tysabri would be an option & with him so young I bet they would classify it as SP with relapses still present...to try Tysabri first.

i asked my doc where i was on this chart, she said i was at least worsening RR and after that it becomes very difficult to determine the stages.

www.mult-sclerosis.org/msprognosis.html

when you look at the chart notice how there is a line "clinical threshold" beneath which it's not visible above it is.

www.mult-sclerosis.org/msprognosis.html

EDSS Table with times on average at each edss level.

scroll down to find the tables.

http://www.mult-sclerosis.org/msprognosis.html

[lindaincolorado]

I am probably secondary progressive and it has worked wonderful for me. I've had 54 infusions
The infusion once a month has been easy if I get a good nurse that finds the vein - I hydrate, keep me hands and arms warm to make it easier.
I have not had side effects other than a rare minor headache.

Best wishes and good luck to your husband and you.

[REG53]

Hello kwilliams,

I will be having #50 . TY has been good for me I have remained stable with no new lesions. The only side affects s I have had is a headache the first time and feeling tired after ea infusion.

I now take a 2 tylenols and a benedryl before ea. infusion.

I wish you and your husband well.

[kwilliams92189]

Thanks for all of this info! I think that after doing alot of research and hearing from all of you that Tysarbi is going to be our best bet.