Thowell,

I'm glad to hear that your daughter was diagnosed. It's a hell of a difficult diagnosis and so important to find relief. Did she also have neuropathy, I'm not clear on that?

Unfortunately the specialist I saw, who does specialize in the condition among other things, didn't do much testing, mostly because he didn't think I had it, so he wasn't particularly useful and I told him so. But to be fair to him, for one I wasn't the typical case. For example, I don't have POTS, and the majority of patients do. I also don't see the improvement that your daughter does on the blockers.

I'll be honest, I didn't pursue it very much. But that's not due to laziness, since I easily pursue avenues that I think will be helpful, but rather because I don't think I have it. Perhaps I'm wrong, but I suspect other things for now and I really can't get the best testing unless I go to the USA or fork out 1-2K out of pocket for the testing, and since it's not high on my list of suspects I likely won't fork out that kind of money at this point.

So there is a thread for this.

After six long years of suffering, I believe I'm on the verge of discovering that MCAS is the cause of my PN.

I see Dr. Afrin and Dr. Maitland being mentioned here. I just watched videos by them on YouTube last night and almost burst into tears when they talked about what MCAS victims go through trying to get a diagnosis.

Janieg, I hope that this leads to a good outcome for you.

Thanks, kiwi. My fingers are crossed. I've gone on a low histamine diet, and I believe that has pulled me out of a major flare I was in. Now that I've learned more about histamine, I recognize that I was on a high histamine diet on a daily basis. And in retrospect, I can look back and see that my absolute worst flares were also due to histamine-laden meals.

I don't know if a Histamine Intolerant dx can be made without an MCAS dx, but I quite by accident stumbled upon an immunologist who is well-versed and believes in both.

It's now been about four months since finally getting a diagnosis of Histamine Intolerance/MCAS. I'm by no means symptom-free, but I no longer have those agonizing flares. I generally just feel strange neuro sensations vs. pain now.

My immunologist initially told me to take Zyrtec (H1 histamine blocker) once a day and Pepcid AC (H2 histamine blocker) twice a day. Those are cookie-cutter, one size fits all treatments of symptoms. I'm no longer doing that as I'm just trying to keep my histamine levels low by watching my diet. Notably, I'm being a lot more careful with how I treat leftovers. Histamine builds in meat as it ages, and eating less meat has been part of my plan. Salt intake also plays a role with me, so I'm watching that as well.

I'm working with a functional medicine doctor now to try to get to the root cause of my problems vs. just avoiding or dealing with the symptoms of it. That process has just started. If there's success, I'll post the treatment plan.