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

Questions and Comments

My date for Stanford is September 15 (tests) and 16(proceduree if indicated by test results). My husband wanted me to ask if we needed to pay any upfront or does Stanford bill your insurance and the patient is left with the 20% to cover after receiving an EOB from insurance company. I did get notification that my insurance had approved MRI and MRv of head, chest, andd neck which was a blessing. I saw my ...
Read more : Questions and Comments | Views : 1303 | Replies : 6

Hotels in Palo Alto

I'm trying to make plans now for my trip to see Dr. Dake in Dec. Am I right about a Stanford hospital discount for some hotels or did I misread that in a post? The Sheraton is coming up $349 a night for the days I will be there!!! That's a bit steep to say the least.
Read more : Hotels in Palo Alto | Views : 1548 | Replies : 8

Posted "Update on CCSVI" on my blog...

My original blog post about CCSVI has gotten hundreds of hits, so I thought it appropriate to post an update.

Feel free to critique at will... ... sease.html
Read more : Posted "Update on CCSVI" on my blog... | Views : 1817 | Replies : 13

My Friend, Mary

Mary had her surgery yesterday..blockage high up in the left jugular vein (I think I said right jugular in another thread -oops!). She is resting comfortably at the Sheraton tonight. Mary had some nausea to deal with, but seems to be over that now. The forum has talked about how Dr. D is learning, and changing his protocal. Well, Mary is his first patient being sent home without Coumadin! How lucky is she? So maybe ...
Read more : My Friend, Mary | Views : 1784 | Replies : 11

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 : 4158 | 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 : 944 | 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 : 2372 | Replies : 16

Dakes contact info?

Read more : Dakes contact info? | Views : 2155 | 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 : 2573 | 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 : 4634 | Replies : 31


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