first Shayna, I have have a friend on Medicare and a supplemental... her's (I'm pretty sure all, pay the balance of what Medicare does not. She gets disability, so the insurance co knows she has a problem. I know some ask for proof that you have had continuous insurance before going on Medicare and I think that's about it. When I called an insurance broker in CO about supplemental ins he said it would cost me around $173 a month and this is me being younger than 65 when the ins will be less.

Now I would like to share what my Dr. the co-director of the RMmsC told me.
The risk of pml for those on Tysabri 4 years and jcv positive (no immunosuppressants) is,on one scale, 1/787 and on the other scale better. He, also, said that for those longer than 4 years the risk is still better, less cases !!

He wants me to only have one MRI a year, saying pml has not been detected by MRI. He wants me to go back to infusions every 4 weeks saying less frequent has not shown to better your odds of pml. He said Prokarin is a hoax. CCSVI has not been proven. That CD4 blood work is not for us with ms. That if we had a low or high white count there is nothing known to be done-for those with HIV different story with how it works.

I asked about Ampyra maybe helping with other nerve pathways-arms, eyes etc.-as it has not helped my footdrop after maybe the first couple months. I said maybe it's not all Ty that has kept me from progressing. He said some people swear it has helped them in many ways, and then said for me to go off it for a couple of weeks and see if I am different. So, today I stopped taking it.

I think that covers it
Linda

#6 done. i am really getting tired of these needles though. fortunately, they got me on the first stick this time, but it was incredibly painful...

Thanks for all of the great info, Linda

hugs,
Shayna

I'm sorry it's so hard on you, Clarkstar. I have found that some of the infusion nurses are more "gentle" than others. But, if you are a "hard stick" then it's going to hurt

hugs,
Shayna

YOOHOO!! RIVER!!!

Has anyone else noticed a remarkable change in their ability to handle heat since starting ty? I have been on it a year and a half. In the last year I have had to give up hot showers. This summer has been especially brutal. Just had to pull over on the side of the road and leave my lunch behind on the way back from dropping dd off with her dad. I am beginning to think the ty is making the heat worse.

...

Whaaaaaat?

Ok, I'm awake now...

So this week I got a look at what's being offered in place of the perfect insurance plan I have until July 1st.

(where's the icon for large sized bag of !#*+ )

One good thing the company did was to tell Anthem BCBS to tuck their whole bag of carp where the sun don't shine and switched to Aetna. What that will mean at this point is not clear but I did get a look at what they are going to offer me.

I am so sorry that I may not have properly expressed my sympathy to those of you dealing with insurance woes. I have NEVER had to deal with crappy insurance before, but I am getting a crash course in it now. I have until the end of the month to sign up and have been waiting for the "official plan documents" rather than the "8x10 color glossy photos with selling points" garbage they have fed me thus far.

The good thing- they made up a plan for us.

The bad? Why is there nothing on those papers that tells you if you still have OOP expenses after you meet your deductible and co-insurance? What is this co-pay to the doctors and does that go away after you met the huge deductible and co-insurance? What is this 10% payment for MRIs? Why is Tysabri listed on the formulary when it can't be bought directly? Do I need a prior authorization to breathe too?

There's hundreds more questions on my paper. There's a meeting next week to explain it all. I am telling you, they better send someone who knows what they are doing to this meeting because I will be taping it and holding them to every word.

Never ever peace me off if you are in any way associated with selling and delivery of insurance policies or you work for Anthem BCBS...

I bet they are going to wish that Tysabri hadn't worked so well on my cognitive skills!

((oh yeah, I scheduled every test known to mankind this month and refilled every prescription with a three month supply.I have been poked, prodded, scanned, spread, squished and shot. I still have an MRI and the eye doc to go, but I am leaving Anthem with a lovely going away present, thousands of dollars worth of love... ))

After 4 days off of Ampyra I went back on it My leg was dragging worse, my little finger on my R hand tingled (or something)... there was one more but I can't think of it. Soooo I guess I need to give Ampyra some of the halting of progression credit !!!! WOW and I was giving it all ( with a bit of wondering) to Tysabri.
I have now moved into my own place, slept here last night and basically hangin in... want to be happy with my new life-just not there yet.
Linda

Oh yeah!!!!!!!