I’m intrigued by the cryptic message on mast cells! I’ll ask darling PCP to put me on Cromolyn Sodium as well and will wait rather impatiently for more info. Sounds very good!!
I need PCP to order the right test (fMRI, yes?) or refer me to an interventional radiologist still for the CCSVI diagnosis? Of course I trust you on all this! You’re the drum major of this offbeat, disjointed (heh), ragtag, band of misfits so you lead, I’ll follow. -Jodi
I think that is a great start for now. You MUST get your CO2 above 21 for Diamox to even WORK, so that will be great. Great idea to get on Cromolyn. Smart move. Yes, you’ll want an fMRI, but as I mentioned, you may want to wait for the TOP SECRET blood work. 😉 Did you see my video of the lecture at ISNVD? It looks like we have compression of our vagus nerves from the enlarged veins, and if they are too big (like my son’s and mine), angioplasty won’t help. In fact, it may cause some endothelial damage that makes us worse. Yikes. If the veins are smaller, then angioplasty may be just what we need to take pressure off of that nerve! Either way, we want our cytokines in balance first, so that will buy me some time to finish negotiating with this lab (can you say “snail speed”?). Jeez, they’re killing me. But they are the only lab offering this right now, unless I go to a University research lab and work something out (always have a Plan B). Pedaling, pedaling… 🙂 Diana