bibliotekaren wrote:NYC Marc - Did Dr. Dake suggest omitting the MRV or have you already had that done? I was talking with a doc today about whether I could do some of the testing in my city here. I said unlikely at this point. Look forward to hearing your results.
OR Mark - So, was the CT venography the primary diagnosis tool used at Stanford for your testing?
Thanks for the info.
marcstck wrote:Dr. Dake strongly advised that I get the CT scan in place of an MRV. He said MRV's are very "operator dependent", and that CT venography would be more reliable.
This after six years of being labeled "atypical PPMS"...
bibliotekaren wrote:This after six years of being labeled "atypical PPMS"...
Do you mind elaborating on what makes you "atypical" in presentation?
Lyon wrote:Thanks for the info Marc. I think that's the most specific information I've read about your situation yet!
I'm not sure of your opinions and not to offend your sensibilities, but have you spent much time investigating the other diseases that are considered autoimmune to see if descriptions of any of the others sets off any alarms?
marcstck wrote: I'm more frustrated than a toothless man at a corn on the cob festival...
peekaboo wrote:marc - there was a discussion recently on ms look alike deseases CIPD and one involing the PNS. here is the link if you missed it.
regardless, wishing your the best
P.S. Do you pace in your wheel chair? I am noticing that i have started to do so especially while i am on the phone.
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