HI Diana,
WEll lots happening… here is a recap for everyone….Im digging into everything as much as I can so I know what Im dealing with….Im trying to keep working in the meantime which is a challenge teaching and traveling so much but IM trying very hard to do what I can since one day I may not be able to.
So.. I just completed my blood tests and 24 hr urine test for Dr Castells office to look into my potential MCAD situation. Not sure the tests will prove anything, but its a start and we will go from there.
I think I will be going to Dr Sclafani in NY to do an ultrasound and consult for the possibility of CCSVI. I may not have the angioplasty since it may not work for me due to the EDS, BUT it will be nice to know that the Diamox can be a treatment for me if I do have vein issues with the CSF fluid draining properly.
My Neurologist has given me Diamox to try. Ive been traveling wtih work and with DR appts so I havent had a chance to take it just yet. I hope to try soon. I have a low tolerance to meds so I need to be at home when I try this. Im hopeful the side effects arent hard on me and it helps if in fact that is creating some of my issues.
Im hoping to see Dr Francomano… Im just awaiting her to view my 27 page application to learn anything I can on the genetic side…. in the meantime I do have an appt with Dr Tinkle on Nov 28th. He may not be able to help me, but other opinion cant hurt.
Im going this Fri (Oct 28th) to see a specialist in TMJ in Dayton OH… I think my TMJ is creating some ear issues for me as well as pain and ringing etc….
Im taking my H1 and H2’s.. also doing Zaditor eye drops and Pataday, doing Nasalcrom nose spray…
I think my biggest trigger is STRESS…and with POTS… Wow… I also take Xanax for that it helps esp with my travel schedule.
So folks thats where IM at… Im determined to do what I can, learn what I can, and catch up with research!! I know we have something that isnt going away… but Im not going down without a fight and giving myself a chance for the best quality of life possibly.
A very special THANKS to DR Diana for everything she knows, does, shares and researches for us… she is a God send!! Im thankful to know her through this forum!! Wow isnt she making a difference!! Thanks just isnt enough for what it means.. I will keep everyone posted as I learn more!! and also when IM able to take the Diamox…..Im really anxious to see Dr Sclafani in NY to try and confirm the head pressure thing if possible. Just to know!! Tracey