I'm not ignoring JB's quesitons - he and I have chatted about this decision. I have told him the same thing - go back and tell the doctor not ask. CIS is recognized by the FDA as treatable with the DMD's.
This falls in the same category as doctors saying its benign so dmds are not necessary.
DUMB, Dumb , DUMB!!!
Hi Johnny,
If you were dx'd with CIS, the Dr. is going completely against the recommendation to by not treating you with a DMD. I don't understand Drs decision at all . Early treatment is key. Study after study prove this.
If it were me, I'd straight up ask the Dr (politely) simply, why? YOu can even preceed a statement that from what you understand of the DMDs, they are best started early in the course of MS.
Sorry to not get back to you sooner. When do you go back?
-Shell
I meant to add that Shell is right - if you can do any of these presentaitons, be sure to - they are always worthwhile in some form or another. -Lu
It must have been MS night - I spent almost 90 minutes on the phone listening to the MRI talk sponsored by SS. The neuro spent too much time talking about "what is MS" for my liking. And there were some really long-winded questions from MS patients that had absolutely nothing to do with MRI's and the loss of that time really bothered me.
But, like shell, I also learned some new things. They will be doing a new session tonight and I plan on listening to it as well. I have 4 pages of notes and undoubtedly will add to them - I plan on putting them together in some form for us here.
BTW - I was so frustrated that I couldn't ask any of our questions from here about MRI's, that I spent some time finding this doctor's fax number and I sent him our questions and asked if he would cover them tonight. Hopefully he will get my fax and see the types of information we would like to know. These questions are based on the ones you helped put together back in March (that neuro still has not answered them!).
That's very informative for me, I had my DX at the end of April- MS Specialist, he said it's mild MS & I he thought RRMS but doesn't recommend any DMD.
Now I had the follow up visit with my local Neuro that had recommended I see the Specialist, the local neuro thought is CIS or RIS, and he said no DMD yet, however prior to seeing the Specialist the local neuro had suggested maybe I should consider Copaxone. What changed his mind?
I guess my gut feeling is they are waiting for more time, since the DX was based on the MRI'S and some clinical evidence, & the VEP.
Do I push these Dr's or just wait? OR is nothing to be concerned with?
Thank You for your post
John...