best of luck in CO linda! thanks

#52 down!
As usual, no problems, no concerns.
Pending results from my test for JC antibodies, Doc has agreed that we can switch to a 6 month schedule for appointments, rather than every three mos.
I'm healthy and happy and four years relapse free!!!!

He also said if my cost is too high when my company throws me under the bus (they are dropping my full service plan because ANTHEM #$%^& refuses to negotiate on any other plans because of my plan) that he will stick me in the corner and hang a bag right there.

Hope I see some of you after tomorrow! If you are expecting to be swept up, please leave all your money to me, I'm going to need it since I am sure I will still be here!

Life is still good!

Happy for you RW
Hate what your insurance co is doing
Fri I had # 55 I've been on Ty for 4 years 8 months but changed my infusion schedule, so soon you'll be ahead of me
Linda

I'm in the infusion room now getting #28. First infusion post negative JCV antibody test! It's nice to have a relief from the anxiety of PML, at least for now. Will get another test at the end of October. I'm now switching to every 7 weeks instead of every 8 weeks since the Tysabri seems to start wearing off around week 6. Hopefully I can keep the UTIs in check. Hope everyone is doing well!

I'll have infusion #45 next week. I had to postpone it for a week because my grandchildren are coming to visit I just spent a week in California taking care of them because my daughter and sil both had to go into the office to work M-F. Now they're need to come to Nevada and I get to babysit again

Infusion #44 went ok. I'm having my infusions at my neuro's office now. Originally I had some concerns about the size of the room and how crowded it was, how often the infusion room was being cleaned and whether or not the infusion nurse was ill....she told me she wasn;t feeling well.....and the nurse's lack of confidentiality. However, my neuro has addressed all of the problems and I'm hoping things will continue to improve. She had the infusion nurse declutter the room so it was possible to recline in the recliners...I need to or I get dizzy......and it's now possible to get up and use a restroom if necessary. Since the room has been decluttered the cleaning staff can now dust and mop daily. It does help to be able to breathe...LOL As for the nurse's lack of confidentiality I'm hoping that having the neuro talk to her will help.

After my next infusion I will only have 8-9 infusions before I must switch to medicare. I don't know if I will be able to find a supplemental insurance which will pay for Ty. Medicare only pays 80%. The cost of Ty is going up. If I can't find a supplemental insurance to help with the other 20% I may need to stop my infusions As it is we are paying $1000 a month to have medical insurance and since my husband is on medicare only $150 of that
$1000 is for him.

Ok...I'll worry about that in a few months. Right now I'm going to continue with my infusions and enjoy the benefit I receive from them.

I hope everyone is doing well. Linda I don't know if you are in AZ or in CO now. Wherever you are I hope you are able to get your infusions.

hugs to all,
Shayna

RW I'm so sorry about your insurance!!!!!!!!!! Mine will no longer allow me to have infusions at my "old" infusion center. And, I was so happy there...LOL

hugs,
Shayna

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...

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!!!