This Is MS Multiple Sclerosis Knowledge & Support Community

garyak, I'm sorry to hear of your friend's struggles. PCakes has suggested some excellent links. May I suggest a different approach? Rather than trying to convince a doc (or two) whose heels are dug in, what about connecting with other folks in the area who may know of a doc who IS willing to write ...

Selkie, Here is a note from my friend who was just there and had the tests a few weeks ago: "this is what I had done and what is listed on my Medical benefits Request form w/ test codes etc. that I received from them after my test. This takes 2-3 hours to complete. MRI of brain w/ and w/o contr...

I haven't been to San Diego, but I know several people who have been tested there. It is my understanding that they do the following: MRI MRV of head and neck (this is the Haacke protocol and on the link listed below is shown as MRA, but in the description it mentions venous flow) fMRI test I think ...

We've moved the location for the gathering on Sunday... We will now meet at the Mukilteo library's meeting room, which is air conditioned and accessible. The forecast has a heat wave in store for us, so too hot to be outside at a park! Sunday, Aug 15, 2pm The Facebook event has details: http://www.f...

I'm crying... tears of happiness and gratitude... and relief.

"Thank you" doesn't even begin to cover it, but it's a place to start.

Thank you for being there for us.

Bumping this up for others to see...

Please join us on the 15th!

If you're in the Northwest and would like to meet others interested in CCSVI, join us in Everett, WA on Sunday, August 15 at Forest Park at 2pm. This is a casual gathering with family and friends welcome, to get to know each other. Here's the Facebook event: http://www.facebook.com/event.php?eid=143...

Bluesky,

I've been following your posts since I joined TIMS in November of last year. I'm so happy for you!

Sending you good, positive vibes today! You have lots of support here at TIMS, as you can already tell...

Pam

Flash- I'm so happy to hear of your improvements. Thanks for posting such detailed messages. I'm very interested in your story as I have mostly spinal lesions, and am curious if I have issues in the azygous... Someday I'll find out! Your results are encouraging, and I hope your dear wife lets you vi...

GiCI-
Thank you so much for the update!

I was just going to post the Community Care site (Siskin's group), and I see that Ruthless has linked to it above. Here is the link to the source: http://www.communitycare.com/Practices/Interventional_Radiology/CCSVI_background.asp It has great info and a comparison to venous insufficiency in the le...

In case you're wondering what a Pink Door party is like, I've blogged about the party:

http://theplacespamgoes.blogspot.com/20 ... -door.html

It was quite the event...

“Last Call”… for the signature drink “Wheelchair Kamikaze”. What’s that? Haven’t heard of it? Come and try it at the party! Call now to reserve your tickets: 206-443-3241. Jackie Roberts has a wonderful party planned for us at The Pink Door on Sunday. As mentioned above, proceeds go to BNAC for CCSV...

Dr. Sclafani,

My husband and I would be willing to invest in a CCSVI related business if you need investors, and are also willing to fundraise.

Be sure to let us know what you need.

Pam

I'm so sad to hear this news... :x OK - yes, that's a mad face too. Have you made contact with Dr. David Hubbard at The Hubbard Foundation in San Diego? It is my understanding that they are doing the testing at their facility and then will soon be referring out to several docs to do the procedure......