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 didnt really expect. In just 2 years, his entire spinal cord is covered in lesions. The MD's said they have never seent his before especially in someone who is so young (23) and who hasnt 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??
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Hi KWilliams
For Starters I am sorry that you all must go through this. I have MS as well and I am 26. I know the struggle. The anger of not being able to do what you want to do. I try to look at it this way.
I dont look at the number of lesions, I look at my life and my number of friends. The quality of my life and that while having MS is a battle it is not fought alone. You are lucky to have each other in this and no matter what having each other is more than some others. Base more on how he feels and less on what they say. Do the treatments. Listen to your doctors but remember the best medicine you can give him is LOVE
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I wish I could be of more help. I've been offered chemo. It's sometimes used when CRABs don't seem to help. It's an immunosuppressant. I know cancer patients that have taken that form of chemo. It's hard to tolerate, so I turned it down.Comment
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wow, sorry you are all going through this.
while i have not had this problem, i am now on my 7th medication in 7 1/2 years (not counting any roids) the one i am now seems to be working well, while one of the others did, or not as well as hoped. (i was dxd at 13, while be 21 in august)
i have been on chemo for ms. that first didnt work for me, the one i am one now is a chemo, but isnt usually used for MS. and the chemo that is used for MS is different from the ones for cancer patients. if it is, it is in much lower doses, so dont let the word chemo scare you too muchLearn from yesterday
Live for today
Hope for tomorrowComment
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k,Originally posted by kwilliams92189 View Post
My son was diagnosed at 23 as well - he has so many lesions in his spinal cord that his neuro could even count along with over 100 in his brain - his progression just kept going while he was on avonex 3 flares in 3 months.
His neuro was extremely concerned and so switch him to Tysabri - he has now been on Tysabri for over 4 years and has not had a flare or any new lesions. Just wanted to let you know.Dedra
Son with MSComment
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Thank you so much for all of your support and advice! We saw another specialist yesterday and are starting Tysarbi the beginning of july. He has to be off his current meds (Rebif) for 30 days first. Which to be honest we are kind of worried about him not being on any meds for that long. We are very thankful that we found a reliable specialist who cared and was willing to listen to us.Comment
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It was scary when Chris had to go off avonex - he was off for 6 weeks before he started Tysabri
He did have lots of issues during that time, but once he started Tysabri he regained much of what he had lost
Good luck on your journeyDedra
Son with MSComment
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