Last night I attended a lecture sponsored by the manufacturer of Rebif. I've attended similar lectures in the past (those sponsored by the NMSS and others sponsors), and they are so very informative. Even though they are usually topic specific where MS is concerned (this one specific to DMDs), there is always something I pick up from them in addition to that. This one, I was able to speak with the Dr. directly, he seems to feel very strongly about getting on one ASAP after dx.
This Dr. did speak to the specifics of the comparision studies between DMDs. And, in-line with the information we post here (Cudos to US), Rebif comes in very comparible to Copax (long term), though they work by different mechanism (interferon vs. peptide).
I also took away from the lecture that dosing is so very important ( in my heart I knew it, but needed the reinforcement). It's important for us to keep up w/our schedules! He recommends re-starting your DMD immediately after pregnancy.
So, this is just a friendly reminder to attend them if you are able. If you pick up one useful tip of info to help yourself, or someone else, it will be very much worth it. For me, I really needed the reinforcement. And, dinner was just an added bonus!
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?
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!).
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?
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.
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