Aww, MJ, thanks for that… Absolutely. Although we all have funky genes and are special in many ways, I have no doubt that our study medications will stop your POTS and dysautonomia. Now, we likely have other issues, but getting rid of that has been a God-send, I must tell you. Were you able to try mast cell meds (Zyrtec, at a minimum)? If that helps, enjoy it! However, I’ve learned that we need more than mast cell treatment. One mast cell doctor I know thought that mast cell meds would do it 100%. Rats, no, but the rest is not expensive, and I can hardly wait to show this!! Meanwhile, I waited 9 months to see a “POTS specialist” who also DID NOT EVEN TEST ME (years ago). I understand your frustration. On the TTT (finally!), my heart rate went from 75 to 164 in 10 minutes. Every year, I went to Mayo to have it rechecked, and it was either identical or worse (BTW, we got “pre-covered” by my insurance company to go to Mayo.) Soooo discouraging. Now, no POTS or dysautonomia. Zero. And it only took me NINE YEARS to figure it out. (ha). I’m soooo glad that coming to the forum helps you to feel better, my friend. That is one reason it is here. Hang in. I’m working with researchers and attorneys to get the studies in place. Yea, attorneys… and you thought doctors were hard to deal with?! Big hug, Diana
Hi Dr. Diana :).
I know I am in one of those ‘fragile’ states, but I cried when I read your email. No, I have NOT tried Mast Cell Meds nor have I been able to get Diamox. THE DOCTORS ARE NOT LISTENING TO ME AND NO ONE IS HELPING ME. I am getting no where and it is so depressing. For me, you are the only one that understands everything. Dr. Diana, can you PLEASE look at this pic of a HUGE vein in my neck? Does this mean I have CCSVI? I emailed you a 31 second video of SEVERE body-wide vein distention when I sent you my mailing address for the symptom check list. I am hoping you can check it out. It could be an indication of SEVERE mast cells. Not sure. But can’t live like this anymore and not getting anywhere with the doctors. Perhaps if you can give some feed-back on the neck veins pics and the Dysautonomia video, and I can tell the doctors your opinion then maybe they will FINALLY do something to help me??? Also, I sent you my MRI CD back at the beginning of July, and I fear it may have gotten lost in the mail. Did you receive it?
Thanks Dr. Diana. This site REALLY is a life-saver for me. And I am sooooooo glad your POTS is gone 🙂