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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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!
dx dual jugular vein stenosis (CCSVI) 4/09
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 )
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.
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.
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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