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A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Heard Back from the NIH

Just a quick recap: I've been going down to Bethesda, Maryland to be seen by the doctors and researchers at the NIH, to take part in a "Natural History of MS" study that they're doing. My case is so atypical that they've taken a special interest in it, and have done some additional testing (MRI SPECT, diffusion tensor scans, etc.).

Last Thursday I made my third trip down to the facility, and I had sensory ...
Read more : Heard Back from the NIH | Views : 4056 | Replies : 37

MS website writer seeks interviewee(s) re: CCSVI

I'm in contact with the woman who writes for this site: ... 30/central

- and she is interested in interviewing someone about CCSVI - she asked me, but since I have not yet been scanned or treated, and I don't feel I am as fluent in the background as some on here, I thought I'd punt ...

So if anyone would be interested, let her (Diane) know at ...
Read more : MS website writer seeks interviewee(s) re: CCSVI | Views : 916 | Replies : 0


Gici recently commented that a lot of money will be saved by this treatment if it is shown to be the singular treatment for MS (not yet proven)

I have insurance--a cadillac plan too. I have been on copaxone since it came out. It was originally a shocking 1200 a month. My husband and I at a job change had some scary time worrying about how to get it.

I remain on it though I ...
Read more : Costs | Views : 2300 | Replies : 16

Dakes contact info?

Read more : Dakes contact info? | Views : 2132 | Replies : 9

Co-workers wife had the tests with Dake yesterday......

Bi-lateral IJV occlusion.

Bi-lateral stents inserted to restore blood flow, surgery today.

She had very similar symptoms to Mel lets hope she gets the same results!
Read more : Co-workers wife had the tests with Dake yesterday...... | Views : 2518 | Replies : 18

Oligoclonal immunoglobulins

We all know how those Oligo bands are used to diagnose MS....the bands show signs that IgG has been elevated in the CNS, and myelin is being destroyed. The story MS patients have been told is that this is caused by a rogue immune system, eating up their myelin for no good reason.

BUT....Oligo bands are found in other cerebrovascular diseases...not just MS.

Oligoclonal immunoglobulin (Ig) bands were found in cerebrospinal fluid (CSF) by agarose ...
Read more : Oligoclonal immunoglobulins | Views : 4551 | Replies : 31

"Beggars" become "Choosers"

It is time for people to start thinking.
Let us review the situation of MS sufferers before the Zamboni's revolution.
Nobody knew the etiology of MS but everybody knew the inevitable outcome. Being diagnosed with MS meant a sentence to a painful and distressing death. Neurologists and allied professionals prescribed all sorts of different treatments for a condition they did not know the cause of. These different kinds of treatment, from shots of prednisolone, interferon ...
Read more : "Beggars" become "Choosers" | Views : 2681 | Replies : 15

Plavix in the news...

Read more : Plavix in the news... | Views : 1114 | Replies : 0

2 letters to editor re: Zamboni's article in JNNP

One is from Steven Brenner, neurologist in St. Louis MO and the other is from Marian Simka, specialist in angiology in Poland. Isn't someone on this site seeing her?

At any rate, Brenner I can understand but I can't make heads or tails as to what Simka is saying here. Easy to understand medical lingo, anyone??! Maybe these letters are already posted on the sticky above?--I didn't see ...
Read more : 2 letters to editor re: Zamboni's article in JNNP | Views : 1989 | Replies : 12

On Hold w/ Houston

getting app. for ultrasound testing.

looks like it will be sept. 24th and after the ultrasound i will meet with the Dr. to discuss the results.
Read more : On Hold w/ Houston | Views : 1278 | Replies : 5


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