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I talked with my neurologist's nurse yesterday, and asked what she was seeing in terms of insurance coverage for the new formulation. She said that in March and early April their office was urging patients to move to the new dose, but have now changed their stance since they were finding that only 2...

This answers a lot of questions I've had. I guess I will probably be switching to the new dosing system, since I need the co-pay assistance from Shared Solutions.

http://ccsvi-ms.ning.com/profiles/blogs ... es_network

Hi, just another idea of what may be going on. What you describe sounds somewhat similar to shingles. Has the doctor considered this? I got a case of shingles about four months into taking Copaxone and my internal med doctor didn't catch it. It wasn't until I went to my opthalmologist (because it ha...

I had not thought of the possible insurance complications, as Questor mentioned. Does anyone have an estimate of the time frame we're looking at here, as to when a 20-mg injectible generic might be available and thus insurance companies will want us to switch?

In the past two weeks, I've had a phone call from my specialty pharmacy urging me to talk to my doctor about the new dose, and also from my neuro's office recommending that I switch to the new dose. Do the providers and doctors get a kickback from switching patients to the new (presumably more expen...

Hello Dr. Sclafani, you have been very helpful to me over the past few years as the thinking on CCSVI and its treatment has been evolving. Thank you for all the time you give to this forum. My question involves the current thinking on MRV's usefulness in diagnosing CCSVI. I know that venogram with I...

Do any others out there have MS and ALS in the same family tree? I wonder how common this is. I don't believe it is a coincidence, and I definitely hope CCSVI is the common link. Yep. Maternal grandfather had ALS, although apparently a longer-than-usual course. For several years the Mayo Clinic cou...

I was diagnosed as having RRMS two years ago, and have been on Copaxone for a year. I'm doing great, with no symptoms other than waxing and waning in the strength of my voice. I applied for a government job about six months ago, and have passed through all the various levels of the application proce...

Thank you Rose, from the bottom of my heart. We really need you in this endeavor. There are thousands who have the background to help with the dental project (which is a most worthy project, I am not slighting it). But there are just a handful of you who have personal experience with treatment of CC...

Go Rhonda, go Rhonda, go Rhonda!! Go to that meeting next week! You'll probably get the same type of response Rose did. And I got the same type of response at the last NMSS meeting I went to; a mumbled "more research needs to be done" and then quickly on to the next topic. The difference i...

Now that my husband and I are done laughing hysterically, I'll share our results. :D My husband, in perfect health, has absolutely no swelling around the bottom of his neck no matter how long he holds his breath and bears down (and it was a long time). I have MS (not tested for CCSVI yet), and when ...

It was my birthday yesterday, so I told my family that all I wanted as a gift was for them to sit and watch a movie with me last night. During the opening scenes, my 15-year-old son was groaning about having to watch a "chick flick", but he soon was engrossed in the story. He commented at ...

Interesting topic. I often find myself pressing my hand, HARD, against the back of my neck when I'm sitting for an extended time. I hold it until my hand gets too tired. I'll have to try to evaluate just why it feels so good, but I know that it makes my head feel better.

I admire your selflessness. But heck, I'm selfish and I'm going to call Dr. Dake again It's a nice thought, but sorry... I'm really not selfless. And you MOST CERTAINLY are not selfish for trying to regain some of your life! All of us are on here because we have an urgent concern about our health (...

Hi all... I'm still really new here, but then again not really, since I've been reading every post on CCSVI for a couple months now. I feel like I know many of you! Thanks for sharing your knowledge and experiences. I've had Dr. Dake's address and phone number sitting on my counter for several weeks...