Any connection between Neuropathy and MCAS?

Posted by pennycurious1 @pennycurious1, Dec 18, 2025

I am one of the seemingly millions of people round the globe suffering from neuropathy.

My symptom pattern is immensely diverse with the main symptom of course being pain. However, I have been diagnosed with other sideline symptoms such as a huge histamine overload (not allergic) due to a systemic disorder called Mast Cell Activation Syndrome. I wonder whether there could be any connection between this syndrome and my neuropathy pains.

Any experience or knowledge about this?

Interested in more discussions like this? Go to the Neuropathy Support Group.

I was on it for about 4-5 months. Didn’t realize that it was stronger than xolair until I went back on it. The first week after the injection I was hyper-like hyperthyroidism. Then the second week of the month I was depressed all week. The third week symptoms got better and by the forth week my moods were back to normal. This happened month after month. Like I said it is stronger than xolair. My doc says that it stops the allergic pathway before it starts. Didn’t want to feel like I was bipolar (I’m not) for the rest of my life. Still trying everything under the sun. I think that my body needs a break for awhile. Just got off of gabapentin cold turkey because my blood sugar was 245.

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Hi Pennycurious1! I can relate! I’m dealing with the same issues. My allergist wants me to see my neurologist to see if they think my neuropathy is causing my MCAS symptoms.The both conditions are overlapping.
I’ve been feeling all alone. I have symptoms of MCAS. They said they won’t give me an actual diagnosis yet?? I have High PGD2 my tryptase was low but I was not having a flare at the time. I have reactions to several foods different smells, things I touch, many medication’s, etc. etc. I have flushing itching heart, palpitations, gut problems,muscle and bone pain throat irritation. It feels like somebody’s crushing my teeth, near syncope episodes, numbness and tingling head to toe… utterly debilitating.. I suffer every day with so many triggers, so many reactions. I’ve been feeling alone and not thinking there’s anybody out there going through what I’m going through. It’s hard to explain to people what you’re dealing with. It’s hard for me to comprehend. This is all new to me. I think I’ve had MCAS for years, but just a mild case of it. I would have muscle pain, joint pain, near syncope and get reactions to medication’s. I thought it was just my neuropathy and just being allergic to certain medications. I was like that for years. Within the past two years, I’ve been under a lot of stress and lack of sleep. One day I just got a bad allergic reaction to something I’ve eaten before. I noticed I was getting reactions to several foods that I had eaten before. When I looked up all my symptoms, it pointed to MCAS. Since I’ve seen my doctor a couple of months ago, I’ve been experiencing the itching gastrointestinal issues which I didn’t have before so I feel like it’s progressing. i’m so glad I’m here. Sorry for the long post Thank you all!!

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