u/Existing_Display_687

Who else is completely disabled by symptoms? As in, every single day, a majority of the day is spent managing symptoms. I have taken beta blockers (can't as they all cause shortness of breath), ivabradine- lowered heart rate but felt way worse, and now am on nothing and soon to trial Mestinon. I was on Midodrine, but kept having to lie down, and it was giving me headaches. It has been a year of this, and I am beyond sad. I am treating concurrent MCAS with Pepcid (just moved to twice a day) and Allegra, and just started cromolyn. I can't drive on a highway, can't walk through a store. Some days are better than others, but not consistently. I had to quit my full-time job as a nurse a year ago and work per diem from home now, but I can't even do that consistently due to symptoms. If this is you (or was you) was there anything that helped? I do lower body exercises while seated or lying down to try to help but cannot walk. Down to getting IV fluids once a week now, but am still losing a lot of sodium in my urine so abd compression/thigh high stockings and salt alone are not enough. Also, I have an issue where if I go too high on sodium intake, I am urinating all night long. I was denied by Mayo, as they said I am "getting adequate care locally," even though I had 2 referrals there. (I live in Wisconsin). I am on the verge of trying to apply for disability if things don't improve, as my husband is carrying the weight of everything.