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

Anyone else get a rash?

I was lying around today and was just constantly itching my head around the hairliine and also my lower torso. After a couple of hours of this I decided it was more than just dry skin so I looked in the mirror. I have an ever so light rash that I can hardly see, but it feels kind of like barely raised chicken skin; ie, can't even feel unless touching very lightly. It's probably nothing, ...
Read more : Anyone else get a rash? | Views : 3098 | Replies : 24

Steve's Turn: waiting for the call

All the records and other documentation have been sent to Alexandra, we've already had our introduction by phone, and we've been exchanging e-mails. Now, we're just waiting for the call.

Can the wheels of healing be more excruciatingly slow??? Of course they can be---like for healing that's never dreamt of, like for healing that never comes.
Read more : Steve's Turn: waiting for the call | Views : 4143 | Replies : 31

Being with a loved one at Stanford

From Loobie's Mom...

Wow, what an amazing, heart-rending, hopeful, informative, exhausting week. I don't even know where to begin! I'll start with how to be of help. Once we got to Lew's first appt. (we were so lucky to have a friend who knew where our destination was!)' I had some time while he was going through his initial tests. I remember someone saying how many long halls there were to navigate. So I took ...
Read more : Being with a loved one at Stanford | Views : 1179 | Replies : 4

Advice on Getting GP Support?

Hi All,

I've been reading here for a while, downloading the articles, reading my old MRV/MRI reports, dusting off the anatomy books, and having lots of ah-ha moments.

I have been phone tagging with Dr. Dake for a while. Saw my Neuro last week -- she supports this for me as I have atypical MS and known cerebral venous issues from brain surgery last fall. My N wasn't familiar with CCSVI but took the main ...
Read more : Advice on Getting GP Support? | Views : 1384 | Replies : 9

Pic of me and the team

I did this once before, so I know I can do it again. If not, please forgive all the editing as I try to bring this image from Photobucket! Anyway, here is Alex, me, Dr. Dake, and Angela.


Ok Shannon, the blond had on heels, so no short jokes :lol:
Read more : Pic of me and the team | Views : 1312 | Replies : 6

GP on board...

Read more : GP on board... | Views : 1362 | Replies : 4


Read more : 123 | Views : 1515 | Replies : 12

Dear Dr. Dake...please can you take Melissa's stents out?

She's got far too much energy and I haven't got it in me to keep up with her.

Friday, Saturday, Sunday I went to bed first and was up second!

It's amazing how much you get used to the other person (the MS'er) becoming almost like a ghost in the house.

Mel was usually either at work or asleep with a few hour bursts of life every now and then, that pretty much left me ...
Read more : Dear Dr. Dake...please can you take Melissa's stents out? | Views : 1544 | Replies : 6

CCSVI, Hypoperfusion and MS

Hi all

I've been lurking through the CCSVI discussion and it seems to me a facet of CCSVI that doesn't seem to have received a lot of attention yet is the whole concept of slowed or "hypoperfusion" and its relationship to MS. I've found it's a pretty fascinating topic.

Per Cheer in the "Just the Facts" thread,
Blood that stays in the brain too long creates “slowed perfusion”...a delay in deoxyginated blood leaving the head. ...
Read more : CCSVI, Hypoperfusion and MS | Views : 17345 | Replies : 81

Mr. Impatient

I know I'm a nervous ninny and am about as impatient as an ADHD child with 2 mountain dews in him, but was anyone else's experience with their legs during the first week or so that they were weak? My legs don't get tingly like they would before the operation with very little use, but they are just feeling weak. I know I just got the procedure Tues. late afternoon, but I was just curious ...
Read more : Mr. Impatient | Views : 3048 | Replies : 28


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