Susan
Guiding Light
Offline
I Love YaBB 2!
Posts: 211
|
I just saw my GI doctor for the follow up to my endoscopy. He sent biopsies out and had them tested for mast cell issues. The results came back saying I had mildly elevated numbers of mast cells in the duodenum. I expected him to blow me off, as the allergist already told me it is not masto, because my tryptase levels were too low.
Well, the first thing the GI guy says, is I do have mastocytosis! He tells me the tryptase tests are not reliable, that they are not sensitive enough to catch everyone, and the biopsy is clear.
Now, I would like to think this was all true, and I have a clear diagnosis. But when I asked him what kind of mastocytosis I have, he was very unsure. Just that whatever I have is mild, because the levels in the biopsy were mildly elevated.
When I asked him what I needed to do, he told me to take the H1 and H2 blockers at high dose for the rest of my life. There are other treatment possibilities, but they are very expensive. He didn't know anything about Ketotifen, and had to look it up online. At least he did! He does know about cromolyn, and also that Singular will help with GI issues, but held those out for later.
Now, I think I shouldn't complain, and I am not, really, but it leaves me a little unsettled. I feel fortunate, as my main doctor has already prescribed Singular and ketotifen (compounded), but he doesn't really know anything about masto. Now it sounds like this doctor only knows the very surface of it, as well. I know, I know, you all told me!
Is there any reason, if I am taking the most important drugs, that I would need to see a specialist? Everything I take helps, but I am far from well. I still have GI reactions, pain, shortness of breath with chemical exposures, and FATIGUE. Any of these could be due to other issues, but I am concerned about how I will tell.
Or should I just give it some time? I have been on Singular for less than a month, and the ketotifen just a little longer. I know those both take time to show major improvement.
How important would it be for me to see a specialist right now?
|