Cu Mom

I would like to expand this thread if I might. I have a diagnosis of MCAS and POTS. I have been to University of Minnesota and seen the specialist there. He was wonderful but what he does is the diagnosis and creates a "plan", 23 page plan! I went back to Cincinnati to implement the plan with my PCP who is WONDERFUL. That doc is also my migraine specialist. The problem I am having is my PCP is just tooooooo busy and it is hard to get his attention beyond the 15 minute appointment. Does anyone have any suggestions on how to find a day to day doctor who understands all this stuff and can act as quarterback on testing, medication trials, disability paperwork, etc. I don't know where to even start. I would be willing to travel so that could cover Cincinnati, Dayton, Columbus, Indianapolis, Lexington, Louisville to name the major cities around me. My brain fog hampers my ability to be creative on my own. Any suggestions would be greatly appreciated!!!!

Loulou, You have nailed it! You might go out and about on a good day and people are like so what's wrong with you. On bad days, I stay home and lay low. No one sees those days so they have a hard time understanding. I am a crafter but My issues limit when i can do things and that is so frustrated! I want me back not only for me but also for my family! L

I had an iron infusion in July 2014 and that is when I went completely off the rails! Previous to my diagnosis for MCAS and POTS, I was diagnosed and treated for narrow angle glacoma. I have come to the conclusion to not overlook any of the routine medical work ups like eye exams. I traveled to Minneapolis to see the author of the above article, Dr. Afrin. Something he said to me has really stuck. Paraphrasing, if you are having chest pain and think it could be a heart attack, get to the hospital. Mast Cell issues may be the cause but if you don't treat the immediate condition of the heart attack, dead is dead and the underlying cause doesn't matter. Don't overlook the basics like eye exam, mammograms, colonoscopy, etc!