Life with MS & EDS

December 9, 2009

Buffalo Research Update

Filed under: Uncategorized — by mseds @ 1:46 pm
Tags: , , ,

This morning I got an e-mail from the “Combined Transcranial and Extracranial Venous Doppler (CTEVD) Evaluation in MS and Related Diseases study” folks at the University of Buffalo.  They acknowledged receipt of the online questionnaire I completed, but informed me that it will likely be 1 – 2 months before I hear back from them.  They’ll either inform me that I’m eligible or that I didn’t qualify.  Either way, it’s nice to have a time line and to know that they’ll contact me regardless.

They also reminded me that they will not be providing any of the CCSVI images to patients or their doctors, however MRI images will be available if requested.  I’ve still not found anyone to do the doppler, but I’m not giving up!  It’s just taking longer than I thought it would.

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9 Comments »

  1. so the good thing about waiting 1-2 months to find out if you got accepted is that we don’t have to go to Buffalo in the dead of winter. Still excited about the roadtrip!!!!

    Comment by posey — December 9, 2009 @ 9:18 pm

  2. That’s funny — I was thinking the same thing!!

    Comment by mseds — December 9, 2009 @ 9:26 pm

  3. Interesting that MS % EDS are used together. I also have been dx with MS and have hypermobility EDS. I have not been confident of the MS dx as I feel the EDS is not receiving enough attention nor do I have a doctor that understands the EDS.

    Comment by Susanne — December 10, 2009 @ 10:56 am

  4. Has anyone else heard that Dr. Zamboni is being prevented by the Italian government from performing any more ‘Liberation Treatment’ operations or is my information erroneous?

    Comment by Victor Palermo — December 10, 2009 @ 12:01 pm

  5. I think I saw that somewhere, but cannot recall the source or if it was verified. I believe they wanted more research conducted before additional surgeries were performed. I’ll see if I can find the source.

    Comment by mseds — December 10, 2009 @ 12:40 pm

  6. I FILLED OUT A QUESTIONAIRE BUT HAVE NOT HAD A REPLY SO I DON’T KNOW IF I AM ON THE LIST OR NOT. I DID GET A PICTURE OF THE STAFF AND A REQUEST FOR A DONATION WHICH I A GING TO SEND BUT WOULD STILL LIKE TO KNOW IF I AM N THE LIST.

    Comment by TINA DIAZ GALLANT — December 30, 2009 @ 9:00 am

  7. I got the same holiday card. It was strange to get that, but comforting to know that my questionnaire was received and that I’m on a list of theirs somewhere. Based on their site, I don’t think they are going to do anything with the questionnaires until late Jan, so that card may be all we hear from them for a while. Please let me know if you hear anything else back from them. I hope we all get good news early next year!

    Comment by mseds — December 30, 2009 @ 9:24 am

  8. ALONG WITH OVER 17500 OTHER APPLICATION THAT WERE SENT IN. IT ONLY ASKED FOR 540. IT SEEMS THEY HAVE BEEN OVERWHELMED WITH MORE EMAILS EVERY DAY. FROM THE INSIDE INFO. WE NEED TO HAVE PATIENTS AND IT WILL ALL WORK OUT SOON ENOUGH THRU OUR OWN HOSPITALS AND SYSTEM. 1 STEP AT A TIME ALWAYS MOVES US FORWARD AS LONG AS WE CAN SEE WHERE IT IS WE WISH TO END UP.

    Comment by JOE — January 2, 2010 @ 9:55 am

  9. Wow, that is a lot of applications although that’s not surprising. I agree that with time our own hospitals will get on board, but I’m discouraged by my neuro’s response. I just hope we don’t have to wait too long, that more research is funded quickly, and that the research determines sooner rather than later the best approach for opening the veins, if anything can be done about the iron, etc.

    If you hear anything else, please let me know!

    Comment by mseds — January 2, 2010 @ 10:45 am


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