As Joan said, I think you'll get as many different answers here as the number of folks who respond
. Personally, my vote is yes. I was very confident that I had MCAS, as my tryptase has never been higher than 13. But the course of diagnostics where I am was to do a BMB to try to find a specific diagnosis. We (myself, husband, hemotologist and pathologist) were all floored when it came back positive for ISM. So, although the treatment is the same as MCAS, it is helpful to have a specific diagnosis for a number of reasons. First of all, when I got my diagnosis, I was in the midst of my CPP disability application (I'm in Canada). As soon as the adjudicator had verification that I had systemic masto, my application was approved. Also, I will be monitored 2-4 times per year, likely for the rest of my life, to make sure that the masto is not progressing. Without the diagnosis, I wouldn't have that care. Finally, it makes it much easier for me to see other medical professionals now that I have something concrete to tell them.
I am extremely reactive, and the few hours I'm out of bed every day are spent sitting or lying on the couch. I react to pretty much everything right now, and haven't had too much luck getting anything under control. And honestly, the BMB was really not that bad. I was premedicated with prednisone and IV Benadryl, and had two nurses, a resident and my hemotologist in the room with my hubby and I when it was done, just as a precaution in case anything happened. It was a bit uncomfortable, but I have lots of GI issues and have had abdominal pain worse than what the BMB caused. It was tender for the remainder of the day, but no more than a stubbed toe would be.
Anyways, that's my long story
. If you have any questions, please fire away !