Hi @lisalucier,
That is so kind of you to remember the appt and check back. Prior to immunology, I saw GI due to all the nausea, Gerd increase along with the decrease BP. I tested positive for alpha gal and he also did a HIDA scan which your normal ejection fraction for the gallbladder is 35-65% I believe it was and my gallbladder ejection fraction was 0. Then on to the immunologist who said I meet criteria for presumptive MCAS (mast cell activation syndrome) given the repetitive episodes of symptomatic hypotension/pulmonary edema with hospitalization and then reaction in antibiotic while hospitalized at that time, plus GI manifestations, skin also with hives and a rash. Because I need 3 surgeries sooner rather than later, they call it presumptive and I had already started treatment with 2 of the meds back in June. The 3rd medicine was ordered and I am on my first full day of it and so far it had really knocked the GERD, nausea down. This is an older medicine and I have already had the issue that pharmacies can't obtain it and only was able to get a partial fill of 12 days worth which will get me to one day post the first 2 surgeries. It is also very expensive, even with insurance. My mail order company said they could get it but I am still waiting a) to see if they really can and b) how much it will cost thru them. I am hoping it works out med wise. Then, I have to decide..do I want to come off meds and do that actual testing or because I am doing so much better, let the diagnosis stand. The only benefit to getting a lab confirmed diagnosis that I can see is that if I do ok for awhile and then get worse again, the treatment would change. So far since I am on high doses of antihistamines and mast cell stabilizer, things are much improved with no hypotension and I have not needed any additional BP meds. Still have some fatigue but that is even getting better.
Thank you again!