Well, me, for now (I just did infusion #8) and I know / have read about others. I have a friend who is at about 2 1/2 years who is antibody positive and is still on drug.

The test shows that, at some point, a person was exposed to JC. It's still unclear, as far as I understand it, how much it increases risk.

JD

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

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?

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

Thank you RW...
His filing in AZ has made this difficult for me because I live in CO; am only a winter visitor here. He has declared residency here; you only have to reside here 90 days.

I have medicare so need to find the best supplemental to cover what medicare doesn't for Ty and other medical needs. As for part D it scares me but I need to figure it out.

My son found an attorney on line-I think he was led by a higher power because in talking to the office gal I found comfort and knowledge ( my son felt the same). I have an appt today. I am moving forward, don't want to but doing what I must.

I so appreciate the hugs!!
Linda

RW,
My migraine is gone....thank God! But the other symptoms continue. I am having my second infusion on Wednesday, but am afraid if I am truthful about new symptoms they won't give me the TY.
I saw my neuro last week, and told them about everything, and they told me it was common to have an increase in symptoms a week or so before your next infusion is due. So, I am not sure how to answer those questions??

Linda, there is a patient at the infusion center that I go to who does not pay for her infusions. Biogen pays for them because she does not have the money or the insurance to cover the cost. I would check with Biogen and see if they would be willing to help you. You've had so many infusions that I don't think they would want to lose you!!!!!!!!!!!!!!!!!!! You're the "poster girl" for Tysabri You've decided to stay with Ty even though you tested positive in the assay.

I'm so sorry to hear of the divorce. It sounds like it came out of nowhere and was a shock to you.

lots of hugs and prayers going your way,
Shayna

Daisy, this may reach you too late...I'm sorry I've been battling a double ear infection for so long I can't remember what it's like to not have my ears hurt.

If you tell them at the infusion center that your neuro knows about the symptoms and has consented to having you continue on Ty they will give you the meds. I know because my infusion center panics every time I tell them I have another infection and I'm taking antibiotics but, I have told them that my neuro wants me to have the infusion so they give it to me. I had infusion #42 last Friday...on antibiotics

hugs,
Shayna

I just had my second infusion today, and both times, I get this dizzy, off balance feeling, hard to hold your head up feeling; and a feeling of shaking on the inside, like some kind of internal tremor.

Has anyone had anything at all like this??

I called my neuro, and was told that it sounded like anxiety as a side effect of the Tysabri. I have never had anxiety before. They called in Klonopin. I hope it helps.....but at this point I don't know if I should continue with the Tysabri??

I have learned that with a medigap supplemental insurance I can get the same coverage that I have now-just will need to choose which one and pay the premium. I now understand part D of Medicare better and the same will apply as with the supplemental insurance.

I am planning on going to the Rocky Mountain ms Center in Denver, CO for a neurologist when I can get home to CO.

Linda