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Rokkit goes to Stanford
Posted: Thu Sep 17, 2009 3:59 pm
by Rokkit
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
Re: Rokkit goes to Stanford
Posted: Thu Sep 17, 2009 4:36 pm
by Loobie
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!
Posted: Thu Sep 17, 2009 4:39 pm
by IHateMS
best wishes in a resolution.......
Posted: Thu Sep 17, 2009 6:00 pm
by CRHInv
Seems that if the blood isn't moving correctly it surely should be fixed.
Posted: Tue Oct 06, 2009 8:09 am
by Rokkit
Both my jugs are flattened at ear level. Lots of collaterals. Getting stents in about an hour.
Posted: Tue Oct 06, 2009 8:17 am
by CureIous
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.
Posted: Tue Oct 06, 2009 8:20 am
by cheerleader
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
Posted: Tue Oct 06, 2009 8:34 am
by radeck
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.
Posted: Tue Oct 06, 2009 9:23 am
by catfreak
Wow Rokkit!!!
We are all praying for you! Please update when you can!
Cat
Posted: Tue Oct 06, 2009 9:37 am
by Arcee
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.
Posted: Tue Oct 06, 2009 11:29 am
by javaneen
Sending my prayers Rokkit. Good luck with everything!
Posted: Tue Oct 06, 2009 11:52 am
by Shannon
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.
Posted: Tue Oct 06, 2009 4:28 pm
by mrhodes40
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
Posted: Tue Oct 06, 2009 5:29 pm
by bestadmom
Here's to a simple procedure, a quick recovery and the elimination of your symptoms. My fingers are crossed for you.
Michelle
Posted: Tue Oct 06, 2009 6:02 pm
by Jamie
Good luck Rokkit!
It's not going to be pleasant but hopefully you'll get some good relief.