Search found 24 matches

by zanne10000
Wed Feb 23, 2011 10:53 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Please vote for my video for The Hubbard Foundation!
Replies: 20
Views: 3338

Thanks so much Daniel! Feel free to share this with any of your friends too! I love the Hubbard Foundation because they have started a Patient-Centric Registry, so that no matter where you go to get treated, you can give a form to your IR to fill out and they will collect data on you. There are so m...
by zanne10000
Wed Feb 23, 2011 10:11 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Please vote for my video for The Hubbard Foundation!
Replies: 20
Views: 3338

Please vote for my video for The Hubbard Foundation!

Hi Everyone! I live in Washington State and a local credit uni0n is sponsoring a contest called Cartwheel for a Cause. I had to submit a 60 second video about a charity I wanted to support. I chose The Hubbard Foundation and if my video receives the most votes, they receive a $5000 donation! I went ...
by zanne10000
Tue Feb 08, 2011 10:14 pm
Forum: Tysabri (Antegren or Natalizumab)
Topic: I have the Infection....
Replies: 8
Views: 3710

ShakyJay, I am so sorry! I was on Tysabri for 14 doses and just quit because I am going to try CCSVI testing and treatment next week. Are you on Facebook? Declan Walsh has a page there for families of patients with PML (his wife has PML), you might want to look into that. There is some sort of exper...
by zanne10000
Sat Jan 15, 2011 3:02 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: "whining about neurologists"
Replies: 65
Views: 10955

"I had brought up CCSVI a year ago and he blew it off, said it was way too soon, made some dismissive comments" Same story here! This week, I had another f/u, told my neuro I was scheduled for Hubbard ("some guy in San Diego", lol) and was promptly told we were at a "philosophical impasse". But, at ...
by zanne10000
Thu Jan 13, 2011 5:42 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: IR in Michigan or Wisconsin?
Replies: 1
Views: 1361

IR in Michigan or Wisconsin?

Hi all:

Does anyone know of an IR testing and treating CCSVI in Michigan or Wisconsin? I thought someone in Madison was going it, but I might have made that up (or the info :wink: fell into a black hole).

Thank you so much!
by zanne10000
Sun Jan 02, 2011 4:39 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Is it poss. to get a count of how many have been tested?
Replies: 3
Views: 1224

Is it poss. to get a count of how many have been tested?

Hi: I first asked my neuro about CCSVI in Dec. 2009, about a week after the news broke in Canada. She called it "roto-rooter". I asked again at my 6 month f/u. She was still not very enthused or interested about it. Now it's a year later, I see her in 10 days and I want hard, fast evidence to show h...
by zanne10000
Sun Jan 02, 2011 4:23 pm
Forum: Regimens
Topic: CCSVI testing denied due to use of IVIG?
Replies: 2
Views: 2171

Thank you! That makes a lot of sense. I had never even heard of IVIG being used as a treatment for MS until around a year ago (and I even worked in an Immunology Clinic a long time ago, where a lot of people were getting IVIG every 3-4 weeks!).

Thanks for you response!

Suzanne
by zanne10000
Sun Jan 02, 2011 5:55 am
Forum: Regimens
Topic: CCSVI testing denied due to use of IVIG?
Replies: 2
Views: 2171

CCSVI testing denied due to use of IVIG?

Hi all-- asking this for a friend. She recently tried to get scheduled for CCSVI testing and treatment, but was told she couldn't because she's on IVIG? Anyone else have this problem? I don't know if it's specific to IVIG, since I have a friend on Tysabri, who was able to get scheduled with no probl...
by zanne10000
Thu Dec 30, 2010 9:41 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: MN doctor -CCSVI - Dr. Michael Cumming
Replies: 91
Views: 22279

Dr. Cumming

Hi all! I personally have talked with Dr. Cumming by phone and I'm in the Seattle area! He really seems to be a great guy and if I were going home to visit my parents in the midwest in the near future, I would go to him for the testing and procedure. He took time out of his day, while driving his so...

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