gosh,qanik, please allow us to talk you through part of it until the slightly revised version is available (assuming $999 is out of your budget? ha). When a book is currently out of print, people with ‘bots’ take a copy and put it at a very high price. This guy has about 2,000 difficult to get books at exactly the same price. OK, I digress. I needed to revise the title, certainly, because when people saw “CCSVI”, they somehow jumped to “treat it with angioplasty”. Yikes. We DO have vein problems — potentially serious ones. To get you started until the revised version is out, please ask us! PalominoMorgan has been here from day 1, as have many others. Most know the basics of “The Driscoll Theory” and can get you started. Meanwhile, numerous other researchers have now accepted and are researching WHY we all seem to have “mast cell activation syndrome — mediator negative”. We respond beautifully to double or TRIPLE doses of H1 antagonists (like Zyrtec — check with your doctor, OK?)… Hang in, my friend. 🙂 Diana
I appreciate all the feedback. I had a very bad flushing episode about a month ago during a presentation- talk about embarrasing!- flushed, weak, light headed etc. Anyway my neuro thought perhaps masto type symptoms and sent labs a few weeks ago (tryptase and urine that were negative). Interestingly he told me to take some zyrtec until he had results and I thought the one dose a day helped with my brain fog but i stopped when he told me the labs were negative.
BrentBRENT!! Don’t stop with the Zyrtec (and maybe add Zantac — more on that later). I’m not exactly “masto-masta”, but to try to figure this out, I had to learn from the best. We usually have negative bloodwork and urinalyses, so we have our own category! We are called “Mast cell activation syndrome, mediator negative”, until we get this all straightened out. Meanwhile, my kids and I are on TRIPLE doses of Zyrtec, AND Cromolyn sodium (well, I switched the kids to Ketotifen — available through Canada– because Cromolyn is taken 4 times a day and is a liquid. That was a killer for them! I’ll bet my left arm (my “good arm”, that you’ll feel better. 😉 Now, unfortunately, that is not all we need, but it will get you started, OK? Then we’ll get to the next layer… If you have symptoms of hydrocephalus, please chat with your doctor about a trial with Diamox (most of us try our first dose in the evening). You may not need it forever, but when our veins SUCK, our ability to drain CSF seems affected, too. Mild hydrocephalus is usually over-looked in our plethora of symptoms. That treatment (with your doc’s OK) should help, too. Brain fog — oh, you mean DEMENTIA?! Been there, my friend — I couldn’t even remember my address nor could I organize or make a “to-do” list. I figured that one out! The brain is back, dysautonomia is gone, and I’m working on our very last piece of the puzzle. Soooo, PLEASE get back on mast cell meds if it helps you feel better. Trust me on this one. The fall-out down the road (what I’m fighting now) is TOUGH — it’s a LOT easier to get this on the “front end” with mast cell meds, if you can. Cool? :)Diana