New Patient=ME

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

New Patient=ME

Postby magoo » Thu Oct 01, 2009 7:52 am

I am officially scheduled for testing on October 16th and consult/procedure on October 19th!
Yes, there is a torturous weekend in between! And, I have been told I will not get my results, even if I ask:(
I am thrilled to be going so quickly. I think my flexibility and some scheduling changes acted in my favor. But that is just a guess. I booked my flight last night. I still have hotel arrangements to make. I will be so busy getting my family prepared for my absence and getting myself prepared for the trip.
So, here is a little background:
I am a 41 year old female. I am happily married and we have two wonderful boys ages 7 and 10.
I was diagnosed 11/2003. I woke up one morning with right sided facial numbness and fatigue. Two days later I developed vertigo, right sided pain, and within a week I couldn't walk. MRI's showed 3 lesions within this month.
My chronic problems have been fatigue, pain, migraine, stiffness in arms and legs, dizziness, numbness, cognitive changes, anxiety, and a few more issues which come and go.
I have been able to do less and less with each passing year. I am hopeful that with this testing and procedure I will gain some of my life back.
I have taken Betaseron, Tysabri and Copaxone. I am currently choosing to give up my C shots. I also take medications so that I can function. I am hoping to eliminate those too!
Thank you to those of you who have paved the way. I know this would not be possible if it weren't for your courage.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby MaggieMae » Thu Oct 01, 2009 8:09 am

Rhonda,

Reading your story, I'm glad you are going so quickly. Hope all works out and you regain your health so that you can do all things you would like and enjoy those boys!!
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Postby magoo » Thu Oct 01, 2009 8:42 am

Thank you MaggieMae:):):)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby CRHInv » Thu Oct 01, 2009 8:46 am

Rhonda,
I am thinking of you. I hope this is our answer.
Take good care,
Beth
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Postby Arcee » Thu Oct 01, 2009 8:58 am

Rhonda, best of luck with your Stanford journey. It sounds like you are making it work in all kinds of ways. Lots of helpful information on the travel thread Sharon bumped.
Congratulations!
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby magoo » Thu Oct 01, 2009 9:06 am

Thanks Arcee!
I have been looking over that thread all morning. It has been so helpful.
Beth, I feel like we are already friends:) Thank you so much.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby magoo » Thu Oct 01, 2009 9:09 am

I feel like I need to say that although I wasn't walking in 03, I have since regained my ability. It has been swept away from me two other times, but I manage to make it back. Just wanted to make that part more clear.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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