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
Hi Dr. Diana,
Yes, an Internist sent me to a Rheum., as she thought vasculitis after watching the video. I’ve always been very interested in your case and symptoms, as I seem to have everything you have, but of course I have no diagnostic proof. I talked him into sending me to a Genetecist for EDS testing after showing him my stretchy skin and funky ‘hypermobileness’. So, I have confirmed Classical EDS, but no one ever looked into my ‘crazy veins’. Or else he decided I didn’t have vasculitis? Is there a test for it?
Ok, here’s the plan, instead of crying all the time (LOL!), I am going to go to my doc and show her the neck vein pics and I’ll show her the ‘crazy veins’ video AGAIN. I will request an MRV/MRA/vascular specialist. I will also go to my eye doc, as I may already have fundus photos (but she said everything was normal). I will also look into Zyrtec. Just need some energy, so may take a while.
As for testing, I’ve had tonnes of bloodwork (I have all the results), ultra sound of heart (came back normal – but INSIGNIFICANT stenosis and regurgitation in 3 different valves and that was laying down!), halter monitor (that came back NORMAL (so therefore no POTS testing) when I know darn well I had brady & tachycardia & arrhythmias AND I had an arrythmia right on the screen when she put it on me!!!), tested positive for oral thrush (antibiotics didn’t work over and over so stopped going in although it is ongoing).
I live in Toronto, Ontario, Canada. I sent the CD’s to 1468 Sand Hill Court, Roanoke, TX. I can re-send them. I am unable to open up the consult/advocacy agreement on the home page. If someone can look into it, I will open it up and sent it in to the consult email address. I would LOVE to have some one-on-one and get to the bottom of this.
Thank you Dr. Diana from the bottom of my heart. I have no contact with my family, and my friends have all disappeared since I’ve become ill, but I have this Forum and I have my dog & my cat, and for that I am grateful.
Sincerely,
MJ