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Old 06-02-2011, 01:32 PM #11
Grammie 2 3 Grammie 2 3 is offline
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Join Date: Aug 2007
Location: Colorado
Posts: 374
15 yr Member
Grammie 2 3 Grammie 2 3 is offline
Member
 
Join Date: Aug 2007
Location: Colorado
Posts: 374
15 yr Member
Default My first appt with the RMmsC

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
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Natalie8 (06-02-2011), Riverwild (06-11-2011), shayna (06-09-2011)
 


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