July 6th, Cali bound!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

July 6th, Cali bound!

Postby Jamie » Wed Jun 24, 2009 1:28 pm

Hi everyone,

So, I spoke with Dr. Dake and have provisionally agreed to see him on Monday 6th July.

He is a very interesting guy to talk to, very open minded and positive about all this.

He has cleared his summer to accommodate any MS patients who contact him.

Houston has been NASTY with record heat for the past few weeks. Mel has really struggled, finally succumbed to provigil, felt better for a day or so but has had a flare up of old symptoms. Worse for a year.

We are both excited to go and have the test, fixed next day - home the day after.

Everyone tested so far has had the blockage.

All y'all who've had the treatment - did it help with fatigue, with heat issues?

Thanks to everyone on here for sharing, for their tenacity, open mindedness and good humour. HiCy last year, CCVI this year - no one could ever accuse Mel of taking this bitch lying down.

I've never loved her more.

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Postby peekaboo » Wed Jun 24, 2009 1:31 pm

YIPPIE...welcome to the stanford club :) July 6th is just around the corner..I believe Cheers /Jeff will be there too.
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Postby Lyon » Wed Jun 24, 2009 1:36 pm

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Postby cheerleader » Wed Jun 24, 2009 1:39 pm

Yup...Jeff, our son and I will be there for his 8 week check up on July 6. Let's make sure to meet up and do the TIMS secret handshake, Jamie. Glad you got to talk to the good doc. He really believes in this, and for a world class heart/endovascular surgeon to take on MS patients, you know it means something to him personally. He believes in this paradigm.

Your Mel and my Jeff are fighters. Jeff's worst symptom was his fatigue and heat intolerance. He was a 1.5 EDSS, with leg pain and bladder issues as well....he still has those, but less frequent. Both the fatigue and heat intolerance have remitted with the stents. He is awake and alert, and full of energy. Took a 10 mile mountain bike ride this morning and is now off at the hardware store picking up lumber for a honey do project. Oh yeah, and it's 90 degrees out now. I can't promise this is "it"..but it's apiece of the MS puzzle...

See you soon!
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby Sharon » Wed Jun 24, 2009 1:54 pm

Mel and Jamie -

I hope you read through the thread "Getting Ready for Stanford". It is a summary of Jeff's, Marie's, Holly's and my experience. I think you will find it helpful.

I was not affected by the heat like Jeff or Holly. I have more problems in the winter when it is cold ---my left leg would become stiff as a log. Obviously, I have not been able to see if that has changed since we are in the hotter months. Fatigue was also not a problem for me. What has changed is that I am perspiring --this is something new. (I can' t say this was something that I desperately wanted to have changed either :lol: )

July 6th is so close! You will be glad to get away from the Texas heat.

Mel is a trouper - enjoy the trip and we will look forward to hearing from you.

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Postby Sharon » Wed Jun 24, 2009 2:08 pm

Cheer - remember Islandgirl will be there July 6th also. Sounds to me like party time!!
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Postby mrhodes40 » Wed Jun 24, 2009 2:17 pm

I wish you both very well! Be sure and ask a lot of questions and post any answers you get that others may be interested in. We are all learning more about this.

I am with you about not taking this laying down, and considering how not very well--sorry if that offends anyone--the regular treatments work fixing something that needs it seems really smart.

Good luck when you go! You'll be there when Island GIrl is.

BTW my heat tolerance is better.
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
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Postby guitarguy » Wed Jun 24, 2009 3:57 pm

I am in Dallas and I sure understand about the Texas heat. 101 here today and supposed to stay that way for awhile. I am not heat sensitive, but if it drops below 70 my legs get stiff. That only started this year. :(

You are having the test in California, Why not in Houston?
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Postby chrishasms » Wed Jun 24, 2009 5:15 pm

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Postby Loobie » Thu Jun 25, 2009 3:53 am

OK, now I'm pissed. You line jumpers :lol: :lol: ! I'll be out the week after and just can't wait. The heat has been absolutely killing me this year too. It's been over 90 for two days and looks to be that way through Sunday; and it's muggy. I'm all messed up, but planning on staying in the pool all weekend. I wish I could be out for the mini reunion!
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