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

CT Venography Scheduled for Thursday

After consulting with Dr. Dake, my PCP has scheduled me for a CT venography of my jugular and azygous veins, this Thursday at 9 AM. I believe Dr. Dake spoke to the radiologist at the hospital where I'll be having the procedure done, to fully brief him on what precise protocols need to be followed.

I spoke with Dr. Dake, and he wants me to send him a disk with the results. Should be interesting...
Read more : CT Venography Scheduled for Thursday | Views : 3692 | Replies : 27


It's a go.

:)
Read more : It's a go. | Views : 1128 | Replies : 3


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 : 3282 | 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 : 4200 | 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 : 1208 | 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 : 1398 | 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.



Image


Ok Shannon, the blond had on heels, so no short jokes :lol:
Read more : Pic of me and the team | Views : 1327 | Replies : 6


GP on board...

:)
Read more : GP on board... | Views : 1380 | Replies : 4


123

123
Read more : 123 | Views : 1530 | 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 : 1565 | Replies : 6


 

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