Cenral Nervous System Vasculitis

[Jim]

www.cnsvfinc.org
A meeting of the Minds and
Birth of the Foundation

[Lily]

Thanks Jim,

I'm recently diagnosed with this as a secondary to Lupus and Sjogrens. Only took me 3 1/2 yrs of roller coaster too :rolleyes: I do owe you a huge thank-you though because I remember reading an article or something that you posted a link to here about your own story (I think I'm remembering that right?) maybe it was someone else's story, however it came via you. That along with various other things made me push on to solve this. The account of driving around and around totally confused and disorientated and various other things really rang a bell. I was a bit paranoid that my doctors would think I was nuts relating this to them, but I'm glad I did report everything now, it did help unravel the mystery. So :flowers: thanks :) you helped me on my journey and also helped me keep some degree of sanity through this :D

love
Lily

[Jim]

Greetings Lily
Yes that was my story.
It is a tough and long ride and I am glad you made it to the
diagnosis.
Please check the site often, as there are many pages coming soon.
Including more newspaper articles.

Love, Jim

You can contact me at CNSVsurvivor@aol.com

[HelenS]

hi jim, i would also like to thank you for the link. i am going through tests right now for vasculitis. have had mri, eeg, and blood tests. neuro has mentioned doing an angiogram depending on the results of aps blood tests. thanks for the info. luv helenxxx

[Jim]

The site has been totally redone, and has a lot more information.



http://www.cnsvfinc.org
A meeting of the Minds and
Birth of the Foundation

[Lily]

Thanks Jim you always keep us well informed and spread the word :) :thumbs: I havent visited for a while but will do so in the next few days. Hope you are keeping well :flowers:

love
Lily

[Jim]

Thanks Teri and Lily:)

We have just added one more feature.

The Foundation is happy to provide informational resources free of charge to you and your family. We hope these will be beneficial as a source of information and resources after diagnosis or while waiting for diagnosis.
You will need Adobe Reader to view and print these brochures. If you would like to download a free copy click here:
If unable to print the PDF files, please use the form at the bottom of the page to request brochures.

http://cnsvfinc.org/resources_brochures.php

Love, Jim

[Lily]

Hi Jim,

They're great :) Thank you :flowers:

love
Lily