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by Cece
Sat Jan 09, 2010 8:11 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Sharing Common Symptoms....
Replies: 45
Views: 14904

Cece - I find it difficult to get my breath sometimes. I can't take a deep breath and can get light headed. It doesn't help my vertigo. I was sick and tired of people, including my Neuro, telling me that I was having panic attacks!! No way!! Yes - I remember being offended when a friend told me tha...
by Cece
Sat Jan 09, 2010 7:52 pm
Forum: Introductions
Topic: Hello from Minnesota
Replies: 6
Views: 1946

I never even thought to dream of such a thing. Doesn't that just nail it? I know I've hoped that it was all a misdiagnosis...that some drug combo would come along that would be better at slowing progression...but this?! I am still wrapping my head around it and I first heard of it a month ago. We d...
by Cece
Fri Jan 08, 2010 7:47 pm
Forum: Introductions
Topic: Hello from Minnesota
Replies: 6
Views: 1946

Thank you for the welcome. I remember being diagnosed and feeling like, No way, I do not have this...and now I can click around a forum like this and, in nearly every post, someone is talking about the same crazy symptoms that I'm dealing with too.
by Cece
Fri Jan 08, 2010 7:13 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Anyone get an MRV here in Minnesota?
Replies: 27
Views: 4672

Anyone get an MRV here in Minnesota?

I'm in Minnesota (Twin Cities area). If anyone here has either had success or been spectacularly shot down with getting an MRV, could you pm me? I'm looking for specific interventional radiologists to either pursue or avoid.
by Cece
Fri Jan 08, 2010 7:01 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Sharing Common Symptoms....
Replies: 45
Views: 14904

I'm in the sore neck club. It's not constant, but it's daily, and it's localized to the right side kinda at the base of my skull. Also cold hands, cold feet. Also early on I brought up to my neuro both that I sometimes have the feeling of not getting enough air and that I have pale lips. He didn't c...
by Cece
Fri Jan 08, 2010 1:47 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: 6th Jan 2010 (Katowice) - POST-OP
Replies: 101
Views: 22418

Congrats on your surgery going well. This is all just amazing. In the pictures you posted, is the stenosis visible? Is there a specific area to look at?
by Cece
Thu Jan 07, 2010 12:59 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Panaceia or Hygeia The Zambody myth.... ( google this link)
Replies: 3
Views: 2508

I can vouch that, having read some of Dr. Rose's posts on the Facebook CCSVI page, he comes across as a troll. I checked out his blog from there and, if I understood it correctly, he is a longtime opponent of angioplasty anywhere in the body. That he'd be an opponent of angioplasty in MSers is just ...
by Cece
Wed Jan 06, 2010 8:26 pm
Forum: Copaxone
Topic: Copaxone and trying for a baby
Replies: 8
Views: 7939

Back when I was trying for my #3, my diagnosing neurologist wanted me to stay on Copaxone for the whole pregnancy!! I was not going to do that but I did keep it up until pregnancy was confirmed. No issues with the pregnancy & he's now a healthy two-year-old. It always took me a long time to fall...
by Cece
Wed Jan 06, 2010 7:59 pm
Forum: Introductions
Topic: Hello from Minnesota
Replies: 6
Views: 1946

Hello from Minnesota

Hello! I'm Cece, from Minnesota. Four years ago I was diagnosed with RR MS. The neuros have batted my diagnosis around a bit...first RR MS, then CIS, then back to RR MS, then the idea that it's benign MS. I'm fortunate but even so the MS affects every day of my life. I'm 34 with three young children...
by Cece
Wed Jan 06, 2010 1:33 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: chelation therapy
Replies: 64
Views: 18058

If it was purely vascular in origin surely older people would start developing MS as the circulation naturally gets weaker with age...whereas MS hits people when they are in their prime.[/url] gainsbourg Lots of interesting info in your post. If you have white matter lesions after the age of 60, th...

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