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Old 04-04-2011, 12:14 PM #5
JTwin JTwin is offline
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Join Date: Oct 2010
Posts: 6
10 yr Member
JTwin JTwin is offline
New Member
 
Join Date: Oct 2010
Posts: 6
10 yr Member
Default My story

I've been on Tysabri for 36 infusions and my MRIs are excellent. No new lesions in three years and the lesions I have have strunk in size. Tysabri seems to be working for me.

I haven't had any serious side effects either. A bit of nausea and a few headaches in the beginning. Fatique for a day or two after the infusion. After that I get a great burst of energy and I feel wonderful until a few days before my next infusion. Many of my MS symptoms were much improved on Tysabri too.

My problem is respiratory. My immune system is unable to defend against any virus I come in contact with which has isolated me a lot too. It's like ordering the fruit of the month basket except I ordered up a cold a month! I finally ended up with walking pneumonia.

After speaking with my neuro, we decided to take a 3 month vacation from Tysabri to see if the repiratory problems cleared up and the pneumonia healed. Then I'm going back on Tysabri. As my neuro told me, it takes 3-4 to heal from walking pnuemonia sometimes. IF the respiratory problems return, we will know that Tysabri could be the cause.

I've been off Tysabri for two months now and my energy level has dropped dramatically. My walking and balance are deteriorating and I'm seeing a serious problem with cognitive problems, speech and spasticity. I'm becoming the person I was 36 months ago and I don't like it. I'd forgotten who that person even was.

It's quite a predicament.
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