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Tysabri Check In, Support and Information Part Three

 
 
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Old 03-07-2011, 11:44 AM #8
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Riverwild Riverwild is offline
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Riverwild Riverwild is offline
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Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
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Quote:
Originally Posted by daisy.girl View Post
It is three weeks today since I had my first infusion. But, now for the past 4-5 days, I have had very red irritated, watering eyes, burning/tingling/aching down my right arm, burning mouth, extreme fatigue, vibrating sensation in my left buttocks and down my thigh, as well as a severe migraine for 4 days straight, and this feeling of an internal tremor (I have never had this before) it is from my brainstem area to my stomach....like I am shaking inside.

Do you think this is a Flare? or a reaction to the Tysabri? about one week after the infusion, I had a irritated, runny, congested nose...and off and on abdominal cramps (that lasted about a 5-6 days)
I would say that the best person to talk to for this is your MD. I didn't have any of that stuff when I first started, just a nagging sore throat for the first few infusions. Have these symptoms eased since you posted?

Quote:
Originally Posted by Grammie 2 3 View Post
My husband is divorcing me. I have been on his federal health insurance as my secondary. It has paid what medicare doesn't pay for my Tysabri and covered all my other meds for a small co-pay.

Now, I guess, I will need to go to medicare part D-which I know nothing about all the different choices as I didn't need to have that knowledge.

The divorce is so horrible in itself and now I have other worries I didn't have 6 days ago. The fear and uncertainty of my Tysabri and other meds is overwhelming .

Thanks for "listening"... and any help is appreciated.
Linda
Wow Linda, I am so sorry to hear this.
It sounds as if it was "out of the blue"!
Is there any way you can be kept on his insurance? Would the COBRA option work for you? I haven't had to deal with losing insurance, since I carry my own insurance and am not on anyone's policy, but there has to be something out there for you. Please talk to your MD and the Tysabri program and see what they can do for you. There's also a lot of other programs out there that may be able to help. I'd also get a damned good lawyer.
I wish I had more for you. All I have is hugs and an ear if you want to talk...Linda
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


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I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
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Negative for JC virus antibodies!
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I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
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"Thanks for this!" says:
Grammie 2 3 (03-07-2011), Natalie8 (03-17-2011), shayna (03-09-2011)
 

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