Wow. that is amazing to hear! My doctors administering the Tymlos don't know who to refer me to so they aren't. LOL Their just letting me suffer. So I am finding that my "flares" are related to upticks in meds - but then subside - I was not going to pursue this. (dental specialist is UBER expensive) then I thought of Ear Noses Throat Dr. which would be covered. But then I read there's no cure. So I figured - what's the point?
I see the endo dr. July 5th and I'm bringing as much info as I can gather. But since I broached the subject of less medication and they pushed back - but then later said "okay, you can work your way up" honestly, I know - they just don't know anything. Nor are they willing to find out -- which is WHY I am spending time HERE with you guys to see what you know. I did work my way up to 8 this weekend and had the TN return but now it is kinda "UNflaring." So I was willing to hang in there. But then I noticed the fat is returning... I wish the pharmaceutical company would have a report on 6 vs. 8 and body weight. I am small framed but probably now carrying about 140, 5'2. Not happy about the weight!
So, I am all ears.... what happened with the TN? Was the neurologist helpful? was it helpful to have an official diagnosis? did your Tymlos administrator work with the neurologist? THANK YOU for informing me where to go! I am so grateful!!!!