E-mail from Dr. Dake

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

Talked to Alex yesterday

Postby Boopieup » Sat Dec 05, 2009 6:59 pm

Not that I can remember much of the conversation a day later, but all I got out of it was "your in the top drawer and on the top of the list". Whatever that meant. When politicians get their fingers in anything, we the sufferers do more of just that--suffer.

I got to tell ya that I'm leaving all the feelings of hope or whatever to Hoodyup. He can go through the rollercoaster. I just mentally and physically can't.

So I guess now we wait. The thing is that I am not a good candidate for clinical trials, so I hope they don't use me for the placebo part if there is one.

I did tell Alex that I really didn't care anymore, but Andrew does. It seems I'm getting worse by the week.

So my summation and response is "whatever". I'll do whatever, but I won't be investing any feelings into the whole thing. I have a short-term thing to focus on. That would be trying to get or keep any leg strength so I can get into the car to go to my GP visit an hour away. Bring on the diapers!
DX w/ RRMS 2004. Self DX PPMS. I don't sit here feeling sorry for myself; I just sit here. View my Blog--history and current events in my life at
http://boopieupsmsjourney.blogspot.com/
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still waiting?

Postby rettahb » Sun Dec 06, 2009 8:10 am

I talked to Dr. Dake in late October. I didn't get any email yet and have been anxiously waiting. I hope I'm still on the list.
Thanks for the update everyone! javascript:emoticon(':P')
Never believe that a few caring people can't change the world. For, indeed, that's all who ever have.
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Postby Sharon » Sun Dec 06, 2009 10:46 am

Boopieup -
you wrote
I just mentally and physically can't.


Anyone of us who have MS know what you are feeling. There are some days, maybe weeks, maybe months that you are just tired of fighting everything that you have to deal with. Each one of us has our "normal" MS days and then when those days change and go bad it is darn disheartening.

I encourage you to continue to seek support here on TIMS. At some point(we hope sooner than later) you all will get your call from Dr. Dake and you will be asked to start filling out paperwork. The clinical trial is a necessity -- and you have an opportunity to be a part of it. He knows so much more than he did six months ago --- you all are going to benefit from what he has learned from us. We will also be about nine months out from the procedure when he starts the trial. Our recoveries from the procedure itself, and our improvements will be measured by a little more time which has elapsed..

Take care and know that there are many people here who are willing to listen to you and to share.

Sharon
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