A serious Question

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crashiedog
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A serious Question

Post by crashiedog »

Hello - I am new to this - I would really like some opinions about my circumstance. I was diagonised in 2002 at age 31. I used betaferon for about 5 years with a relapse every 12 months ( summertime in Australia) I switched to tysabri in about 2008 which worked wonders for me. I only had 1 flare up which required steroids, however, I have a weak left leg as the result. After 60 infusions of ty I turned JCV+ and switched to Gilenya. I have taken Gilenya for 6 months now and had a MRI last week and have found 6 new lesions 5 on the brain and 1 on the spine that are highly active although i am showing minimal symptoms. I had a lumber puncture and 3 days of steroids last week with bloods being sent to Denmark for the JCV titer. Tysabri was a wonder drug for me and i am hoping the titer comes back a low risk of PML so i can return to Ty. I would really love to hear thoughts from people. What can I do? Thanks Wendy :)
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Scott1
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Re: A serious Question

Post by Scott1 »

What city are you in?

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sardi
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Re: A serious Question

Post by sardi »

I'm sorry about the relapse. Luckily your symptoms were minimal that's great.

Here's a link that may or may not help. It seems to give different results depending on how long you wait to start a new dmd after stopping tysabri. I couldn't really get a complete understanding myself, but it may point to some answers. http://multiple-sclerosis-research.blog ... aking.html

I think it has something to do with the way tysabri works, by corralling the lymphocytes so that once you stop taking it, the 'gates open' and your immune system might become overactive.

Good luck with everything. I hope you get some answers.
crashiedog
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Re: A serious Question

Post by crashiedog »

Thanks for the reply I will have a look at the link. I live in the Newcastle area NSW. :)
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lyndacarol
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Re: A serious Question

Post by lyndacarol »

Welcome to ThisIsMS, Wendy (crashiedog).

I encourage you to read the Tysabri forum here at ThisIsMS, especially the following thread: http://www.thisisms.com/forum/tysabri-a ... 24412.html
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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