Dear David,

Thank you so much for your letter....Lovely and supportive in every way.

I'm sure your great energy and drive will lead to a diagnosis and effective treatment for you. Meanwhile, I and everyone here will continue to learn much from your voyage!
Now I'll read the article you posted for me.

Again, thanks so much.

S

Thank you, Sylvie. You're too kind. I appreciate the kind words and encouragement. I hope you're right, and I'll do what I can on my end. In the meantime, I've found a real expert in the field and will be referred to him in the next few weeks. It may be months before I see him, but he is an expert in allergy and immunology, with MD and PhD, and diagnoses MCAS too. Let's see what happens. I'll also write Dr. Afrin in the meantime.

Let me know what you think, once you've read it. The case I referred you too - and I recommend it for anyone interested - is one where one of the symptoms is PN, and one other, extremely bizarre symptom. It's fascinating, if nothing else.

Be well!

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.