Rokkit goes to Stanford

Rokkit · Post by **Rokkit** » Thu Sep 17, 2009 3:59 pm

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

Loobie · Post by **Loobie** » Thu Sep 17, 2009 4:36 pm

Rokkit wrote: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!

IHateMS · Post by **IHateMS** » Thu Sep 17, 2009 4:39 pm

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

CRHInv · Post by **CRHInv** » Thu Sep 17, 2009 6:00 pm

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

Rokkit · Post by **Rokkit** » Tue Oct 06, 2009 8:09 am

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

CureIous · Post by **CureIous** » Tue Oct 06, 2009 8:17 am

Rokkit wrote: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.

cheerleader · Post by **cheerleader** » Tue Oct 06, 2009 8:20 am

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

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

radeck · Post by **radeck** » Tue Oct 06, 2009 8:34 am

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.

catfreak · Post by **catfreak** » Tue Oct 06, 2009 9:23 am

Wow Rokkit!!!

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

Cat

Arcee · Post by **Arcee** » Tue Oct 06, 2009 9:37 am

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.

javaneen · Post by **javaneen** » Tue Oct 06, 2009 11:29 am

Sending my prayers Rokkit. Good luck with everything!

Shannon · Post by **Shannon** » Tue Oct 06, 2009 11:52 am

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.

mrhodes40 · Post by **mrhodes40** » Tue Oct 06, 2009 4:28 pm

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

bestadmom · Post by **bestadmom** » Tue Oct 06, 2009 5:29 pm

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

Michelle

Jamie · Post by **Jamie** » Tue Oct 06, 2009 6:02 pm

Good luck Rokkit!

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

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Rokkit goes to Stanford

Rokkit goes to Stanford

Re: Rokkit goes to Stanford