CIS and CCSVI

MegansMom · Post by **MegansMom** » Sun Aug 29, 2010 6:20 am

Just wanted to start a thread about my 35 yr old daughter. She was dx with CIS Aug 12th. Mostly she was plagued with CCSVI symptoms x June 27th-Aug 5th. Some residual symptoms persist but the acute onset scary ones are much less.

First symptoms("event"): Headache, foggy-brain, profound fatigue, impaired short term memory, intermitent electrical sensations from posterior neck down both arms/hands/fingers( x several weeks), Bell's Palsy of the right face ( x a few days), Vision impairment, thinking impairment

2 MRI of Brain = 2 lesions, MRI C-Spine=0 lesions

Dx CIS

Neuro Dr only following "drug" Tx, definite believer in ONLY "autoimmune" therory"- admitted he doesn't know much about CCSVI.

I have found a local vascular & interventional radiologist to test her for CCSVI that's done this CCSVI specific testing and angioplasty procedures with "incredible" results.

I am sending him her hx and MRI, LP results tomorrow. I feel like a mother Tiger.

Wish us luck.

Ruthless67 · Post by **Ruthless67** » Sun Aug 29, 2010 6:52 am

Isn't Knowledge empowering.

Algis · Post by **Algis** » Sun Aug 29, 2010 6:59 am

Go Megan's Mom; Go!!!

Best wishes

MegansMom · Post by **MegansMom** » Tue Aug 31, 2010 11:35 am

We found an experienced IR physician that has diagnosed and treated CCSVI in Florida! And he is taking my Megan on as a patient.

Unfortunately my daughters neurologist is "old school" and hardly knew a thing about CCSVI.He didn't even want to hear about it. It's her call but I doubt she will continue to see him, if indeed she has CCSVI. His loss, she is a great woman. I can not believe that any neurologist would not be at least open to anything promising and new. Obviously he does not keep up with medical science or watch "You Tube".

Wish us luck!

CureIous · Post by **CureIous** » Tue Aug 31, 2010 1:56 pm

MegansMom wrote:We found an experienced IR physician that has diagnosed and treated CCSVI in Florida! And he is taking my Megan on as a patient.

Unfortunately my daughters neurologist is "old school" and hardly knew a thing about CCSVI.He didn't even want to hear about it. It's her call but I doubt she will continue to see him, if indeed she has CCSVI. His loss, she is a great woman. I can not believe that any neurologist would not be at least open to anything promising and new. Obviously he does not keep up with medical science or watch "You Tube".

Wish us luck!

Good luck! She wouldn't be the first CIS/CCSVI patient. One can only hope this is the road to no further progression. Perhaps if she keeps in contact with her neuro right now, and assuming of course she is CCSVI+, and is successfully treated, he may have a change of heart and help many others. Just a thought. They can talk all they want about papers this that and the other, but for the average Dr. who just sees patients and isn't involved a lot on the research angle or paper writing, they are a bit easier to convince with anecdotal "right in front of me" evidence.

Can't wait to hear how it goes with you, good luck to you and yours.

Mark.