A diagnosis...finally
 

Hi everyone,

It's been six+ years in the making, but I finally know what is causing my neuro problems. I've been diagnosed by an immunologist with Histamine Intolerance (HIT)/Mast Cell Activation Syndrome(MCAS).

Neuro symptoms are not the usual symptoms seen by people who have this, but it's definitely not an unknown symptom. One thing that has been enlightening is that I've encountered people in the both the HIT and MCAS Facebook groups I'm now in who have my really bizarre neuro symptoms. I wouldn't wish them on anyone, but it's some consolation knowing I'm not crazy.

I've always known that food aggravated my symptoms, but I couldn't figure out what. With histamine problems, it depends on how full your histamine "bucket" is as to how much a high histamine food will affect you. Some food might hit you terribly one day because your bucket is full, and not affect you as badly the next time you eat it .Looking back now on my worst flares of all time, there's zero doubt what triggered them. And this also explains my long-standing problem with alcohol wreaking havoc on me.

The sad part is that Mrs D had started a Histamine thread years ago, and I engaged with her on it all the way back in 2015. There are two enzymes that metabolize histamine, DAO and HNMT. I actually bought DAO supplements back then to see if they helped, which they didn't, but it's HNMT I have the deficiency in. . At that point, I dropped pursuing it. I just didn't know enough about it at the time.

So anyway, if there's anyone out who feels strongly they have food triggers, please learn about high histamine foods, and see if you can see any trends with flares when consuming them. I don't see this as the complete answer to my problems because the MCAS is probably the root of the problem, but at least there are things I can do now to help my symptoms...finally.

Mrs D's Histamine Thread:

https://www.neurotalk.org/pn-tips-re...ight=histamine

:grouphug:

Janieg, that is excellent news :).

Really good info on the histamine issue, and can say I have been taking higher doses of Vit C and the Grape Seed Extract which is even stronger than C for many years.

An interesting post, Janieg, because, as well as PN, I have micrcoscopic colitis--and a big theory out there in the community is that it is related to Mast Cell activity.

Wish I knew more about this stuff. Where do I start?

There's an awful lot of information out there just by Googling, but I found this YouTube video to be incredibly helpful on getting me started. This doctor is a well-respected expert. If you fast-forward to 40:36, you can skip to the most helpful information (IMO).

Or perhaps even better for less technical information, at 50:27 and forward, he talks about how MCAS presents itself, and what patients go through getting diagnosed.

Dr. Lawrence B. Afrin, MD, Immunology and Allergy: Mast Cell 11 - YouTube

Beyond just reading what Google will turn up, there are two private Facebook groups that have been extremely helpful and enlightening just reading the posts. It was in the histamine group that found people experiencing the bizarre neuro symptoms that no one here could relate to. They're beyond just the "usual" SFN symptoms.

Mast Cell Activation Syndrome Community Public Group | Facebook

Histamine Intolerance (Closed for Privacy) Public Group | Facebook

I should also mention how much better I feel just getting the widespread inflammation caused by high histamine under control. All the tendinitis, bursitis and general joint pain I had is reducing.