Hi Sylvie,

Thank you for this information. I may have found a local specialist who knows Afrin too, so that's good. I'll definitely update this thread when/if I proceed. In all honesty, I want to pursue this path because I want to know the etiology of it all, it's who I am, not because I think it will help cure or heal me. My guess at this point is that I had some sort of infection, whether bacterial, fungal, etc. via the gut that became systematic eventually and has caused autoimmunity. I have no problem believing all sorts of things may have gone wrong in my body and to say that one intermediary mechanism of action was my mast cells going off the rails, so to speak. I want to know and if I can figure it out, I will. Diet is the key here and it is what has made the immense difference for me. I will continue to heal my gut and go from there. But I wish to look into this among other things, and though I may have inspired you to post about MCAS, you inspired or motivated me to look into this. It makes sense. Thanks again.

Also, the article I posted is actually Mastocytosis, well per se, it's about systematic mast cell diseases, and deals quite extensively with MCAS too. One thing that may have to be done for anyone who has issues indicating MCAS, especially after preliminary blood tests and depending on what they indicate, is testing for Mastocytosis. Regardless, if you read on, the meeting concerns primarily MCAS.

I would say it's as bad as it gets for women, given sexism, and older women due to sexism and ageism, for sure. But I can't tell you the number of times physicians will not look into things or take me seriously despite my complaints and when I've already been diagnoses with SFN and other problems with unknown etiology, because I'm young and I "look good", whatever the hell that means. But I can hold my own, and no doubt it's definitely easier for a young male, who doesn't have to deal with sexism and ageism.

Thanks again for your kind words and the information. And good luck on finding competent and empathetic physicians. They exist here and there...

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.

David,

I think this really may have an impact for you based upon some of your specific symptoms and reactions.

Autoimmune disorders are typically triggered by something and infections are at the top of the list. They don't have to be in the gut (mine was upper respiratory infection, same as many others I've talked to with Sjogren's), but it really doesn't make a difference 'where' it took place. It's the action in the immune system triggered by the infection that matters.

En Bloc,

Thanks for the encouragement, which is what it effectively is. I agree, obviously. How can it not be? It's already clear that it has a major role in all this, to what extent and precisely how, I can't say, no one can at this point. But that 'infection' is precisely how autoimmunity so often, perhaps if not always, begins is quite telling and worth remembering.

If nothing else, I'll solve or work to heal/improve my gut problems, and that alone is worth it. No one can truly be healthy without a healthy gut, and that's worth working toward.

Thanks again

Here's an informative lecture that discusses EDS, POTS and MCAS:

https://www.youtube.com/watch?v=WXAdRiLMG8k