Thanks for this site!

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

Thanks for this site!

Postby AMJ » Sat Feb 19, 2011 6:51 pm

In 1997 I had viral labrynthtis which left me with impaired balance and if I walked for longer than 45 minutes my left leg would start dragging. I adjusted to my life with impaired balance and tried to limit my walks at any one time to 45 minutes. I was the person in the family that did everthing for everybody else and I was still able to be that person.

Then in December, 2004 something changed. I was Christmas shopping with my daughter and I found that I couldn't stand very long, I had to keep finding places to sit down. This just started out of now where. I was hosting Christmas dinner that year and after standing preparing the food all morning I could barely walk. My sister arrived from out of town, took one look at me and knew something was very wrong. She took over and helped me get the dinner on the table. I had a MRI and was finally diagnosed with MS in 2005. My EDSS was 2 and I agreed to go on the clinical trial drug teriflunomide.

Slowly over the years my condition has worsened. I am now the person in the family that requires assistance from others. When I first heard of CCSVI in 2009 I was very interested and like eveyone else broached the subject with my neurologist, whom I really like and respect. He didn't buy into the CCSVI theory. I said I would like to know if I had blocked veins and he said I didn't because it would have showed up on the many mri's with dye contrast I have had. I continued to read up on CCSVI. I found this wonderful site.

In Jan/10 my EDSS was 4.5, by May it was 5.0. At that time I heard about the wonderful Dr. McDonald in Barrie, Ontario who was doing the Ultrasound according to Dr. Zamboni's protocol here in Ontario. My family physcian referred me there for the preliminary scan. While I was waiting for my scan I decided to go off the teriflunomide in Nov. My EDSS was now 5.5.

I was scanned in January, 2011 and the criteria was met for CCSVI - 4/5. My decision was easy - I was going to get myself liberated. Through this site I learned of this very special man Dr. Scalfani who is helping ms patients. He has agreed to do the procedure for me and I am very grateful. Holly is in the process of booking a date for me. Thank you to everybody for posting and sharing information which has helped me make my decision to get liberated. :D And thank you for helping me find Dr. Scalfani :D :D I hope I am one of the lucky ones that sees some improvement.

Anne
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Postby Cece » Sat Feb 19, 2011 7:22 pm

I hope so too, Anne!! Four out of five criteria, that's high.

This is a great site. :D
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Postby Ruthless67 » Sun Feb 20, 2011 9:27 am

Anne,

Welcome to the site and thanks for sharing.

MS drugs haven't helped me either, so I look forward to reading about your results from angioplasty. I really hope you find what you are looking for in this part of your journey. Keep us posted.

Lora
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Postby AMJ » Mon Feb 21, 2011 10:31 am

Thank you Cece and Lora. I will keep you updated on this exciting journey :D
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Postby blossom » Wed Feb 23, 2011 6:09 pm

amj, i agree, this site is the best and there are amazing people with ms here too. and, for dr. sclafani to take such an interest and take the time with everyone he does truly is something i wasn't used to experiencing and i'm sure others feel the same way. and he's helping so many.

the wealth of info. here.

now, we have dr. flanaga "uprightdoctor" that has joined with ccsvi and ccvbp with his knowledge and view point that is helping many.

things are coming together-it's like we can almost taste some real solutions for a change.

i hope to hear you are one that dr. sclafani gets up and running. the very best to you in your journey of recovery.
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