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. … 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 🙂
MJ
Hi MJ, this breaks my heart. Of course I can’t diagnose you or treat you over the internet, right? My hunch is that you have venous disease (vasculitis similar to varicose veins)all over your body, as I do. I can’t in good conscience recommend CCSVI angioplasty for you — my research is far down the path, now, which is why I’m trying to expedite the trials. I cannot tell from your photo what is going on, beyond likely vessel disease. This is why we have the “serious stuff” — MRV’s and MRA’s. Have you seen a vascular specialist? Dr. Black is familiar with EDS and arteries (but not so much veins). I’m not sure where you live (did check the part of the forum for “good doctors”?). I would think that most doctors would want and MRV/MRA for you, at a minimum. What tests have you had done? (And HECK, I never received the CD’s! I’ll scope out my office to be sure, but I’m actually fairly organized with those…). Oh, do you have any fundus photos of the back of your eyes? Maybe that will give us some guidance.
To start on mast cell therapy, the very best thing you could do is get on some Zyrtec (over the counter!). Dr. Maria Castells is now recommending that we take it 3 times a day. That makes all of the difference.
I have an advocacy agreement on my front page you can click on. If you need lots more one-on-one, it may be the best way to go.
Finding doctors can be hard, but not impossible… Maybe we can all help you out if we knew where you lived. Hang in, my friend. You are stronger than you know… Diana