This Is MS Multiple Sclerosis Community: Knowledge & Support

I've had the appt for a while, but I just bought plane tickets today, so I figured it was time to come out of the closet. Oct 5 is my date.

My case is a little unique in that I haven't been diagnosed with MS. I don't have MS lesions on my MRI. I do have oligoclonal bands in my CSF. I have a symptom history (including neurogenic bladder) consistent with PPMS. Dr Dake agreed to evaluate me just to see what's there.

I figure why wait years for a definite opinion on whether or not I have MS? I either have CCSVI or I don't, which can be determined now. If it turns out I have it, then I have a BIG decision to make. Do I go forward with a treatment that hasn't been proven to be effective in a disease I might not even have? It's a weird conundrum.

Rokkit

You got it. It is a weird conundrum. But if you do have MS, the same conundrum presents itself because the efficacy of what you can take as a prescription, to me, hasn't proven anything with any greater efficacy than this model, so if you have stenosis, just get 'er fixed!

_________________
http://myhopefuljourneyintoactualmsreco ... ogspot.com

best wishes in a resolution.......

Seems that if the blood isn't moving correctly it surely should be fixed.

Both my jugs are flattened at ear level. Lots of collaterals. Getting stents in about an hour.

Imagine that!!!
Wow that was fast. Keep us posted!


Mark.

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

Praying for you rokkit....
Keep us posted and here's to f-l-o-w
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Did Dr. Dake understand what caused/causes the problems in both your jugulars?

I hope everything will go well and am looking forward to your update.

Wow Rokkit!!!

We are all praying for you! Please update when you can!

Cat

_________________
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.

Rokkit, as many of us discovered, the worst of it is over for you. Now you know, and it is clear, and something is being done. It's really an amazing thing. You are in good hands, and you are well prepared. Here's hoping it all goes smoothly for you, and looking forward to hearing from you.

_________________
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri

Sending my prayers Rokkit. Good luck with everything!

_________________
javaneen

Best wishes Rokkit!! This is amazing and exciting for you. I can't wait to get an update. Glad you made your decision and are doing what is right for you.

Wow, what an incredible thing! Did you have an MRI and do you have any lesions at this time?

Wouldn't it be cool if your OCB went away? Will you be retested??

very interesting

_________________
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

Here's to a simple procedure, a quick recovery and the elimination of your symptoms. My fingers are crossed for you.

Michelle

Good luck Rokkit!

It's not going to be pleasant but hopefully you'll get some good relief.