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
Thank you again for your response and guidance on this! So maybe things are coming together for me after all and I don’t have as much to do as I previously thought. Doc has ordered metabolic panel label and is working on the cromolyn sodium compounding pharmacy issue. Is nothing easy for us??? Sheesh! I’ve asked the doc about sodium bicarb pills too so I’m hoping that will help. Mastocytosis issues is something we were actively seeking expert help on due to my symptoms. My tryptase was high, but not in the 100+ ballpark so I guess no action needed there for now with the SECRET SQUIRREL INFO to come! 🙂 I found a doctor at the Dayton Interventional Radiology center that will do consults and order any necessary tests to look for CCSVI, but as you recommend, I believe that will also be shelved due to forthcoming secret squirrel knowledge. All things considering, I’m not in bad shape for the shape I’m in! 🙂
I did see the lecture about the vagus nerve compression. Fascinating! One should never think we’re at the end of your theories or discoveries! Cytokines are very interesting from what I can read and so complex…definitely not for the faint of heart to research so silly me that I thought I could quickly figure out what these little boogers did in a quick search. Ha!
I hope you get your lab issues squared away soon. I would imagine something like you’re working on does take a fair amount of time to setup so hang in there! I can definitely say snail speed as I work for a government sub-contractor! What a pain in the patooty to try to get anything done!
I will updated on the EC hydrocephalus. I think it’s definitely related to the Esophoria because I had more fluid drain from my ears this morning than I typically do, the headaches were worse and it didn’t take me to get behind a LCD to notice the blurry vision. Just looking around outside was tough and I felt so disconnected from my surroundings because of it. We take our vision for granted until we can’t see! I did get my new glasses late this afernoon and what a tremendous improvement.
Did anyone else experience a reduction in anxiety or moodiness after beginning Diamox? I thought mine improved, but appears to be spiking…I feel sorry for the poor souls around me! I can tell I’m acting different as a result, but I honestly have tried to control it and just can’t. I also am ditzier than usual, memory is worse and I misread everything. Here’s hoping we all survive until I get this straightened out!
Thanks again!!!!!!!!!!!!!!!!!!!!!!!