This Is MS Multiple Sclerosis Community: Knowledge & Support

I'm supposed to leave in 4 hours for the airport. I am starting to wonder if it is even worth going. What do you think? I mean what's the point of finding out what's wrong if it cannot be treated? In other words will it just cause more stress and disappointment if I actually know what is wrong...as opposed to just not knowing. Maybe all the politics surrounding this Is anxiety provoking??

prof8... that is a tough decision. I was scheduled for Dr Haacke's protocol on Dec 7 but it was postponed. I thought that even just KNOWING I had stenosis or a lot of iron would help me even if I couldn't get the procedure right away. Now I have to wait to get rescheduled. And whenever it is, my husband and I are going to go to Detroit.

ozarkcanoer

I would get the testing done, At least you have something to show your neuros and vascular specialists in your area if something is found.

I certainly wouldn't walk away from the opportunity while it is presenting itself. These types of scans and consults are going to be difficult to set up in the future. Not to mention the wait times.

Absolutely if it were me I would go for it.

Mark

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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

Prof,

I would let others respond to you, but it looks like the clock is ticking, so I thought I would weigh in.

If the cost of the appointment, airfare, time off, etc. isn't a hardship, I think I would still go. If nothing else, you will visit the center of the CCSVI action, so to speak, and get to meet with the doctor who has been looking at this for the past several months. Also, you will come away with some scans, that you could use in case you are able to get treatment in the near future.

So, just going for diagnostic purposes would probably be useful. But, given that you won't get any treatment, if you feel the time and money could be better spent, I would cancel.

Just my opinion.

prof8,
YES.
Erika

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Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

I would add to the unanimity, and say go for it. You will know exactly what you are up against at least. You've already got your tickets, etc. Get the scans, you'll have a "base line", and you will get a few days of California vibe. 'A change is as good as a rest', or so it is said.

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My name is not really Johnson. MSed up since 1993

I would go for it. I can't help but think having gone through the eval/consult might help insure you get in the trial.

Thanks everyone! I think the ups and downs of this whole thing (since I've been waiting since Aug.), getting the call from Alex yesterday, and then reading about the negative reaction of the neuros at Stanford made me hesitate for a moment. But you are right...I should go for sure. And yes Johnson, I will soak up the California vibe. I used to live there and miss it a lot!

good for you! have a safe and wonderful trip, many people will be thinking about you!

Cheers,
John

GO !!!!! Stop pussy-footin' around and get the "ammunition" you need for your MS fight.

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Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."

teehee

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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

Well, I'm waiting in the airport now and the *$&# plane is late!

Situation Normal, huh?

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My name is not really Johnson. MSed up since 1993

I am glad you are going. Let us know what you find.

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dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.