Any connection between Neuropathy and MCAS?

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.

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!!

@nurse1963 can you share what allergist did for you? I have sfn early sjogrens and plexin d1 with allergies to cat dog and dust mite (5 pete) my neuropathy calms when i am out of town so seeing an allergist about shots next month. Currently on ivig

I have looked at this question off and on for the past 10 years. As best I can tell from my experience seeing a highly regarded allergist-immunologist and reading a lot of medical literature over the past 10 years, I believe there is a connection, but it is poorly understood in the scientific community. 5 years or so ago, I did an experiment where I logged my pain levels every day for two months, then went back and compared the data with pollen levels on each day, and there was a pretty strong correlation. In general, I always have more neuropathic pain during peak allergy seasons. I was formally diagnosed with idiopathic MCAS, but it is very hard to say whether that is a cause or an effect as I have had so many other known potential causes of neuropathy (mononucleosis, undiagnosed Lyme disease for 2 years, sarcoidosis, Sjogren's disease, cancer, the list goes on...). Since mast cells are a key link in the immune system chain, it stands to reason that any autoimmune condition has links to some kind of mast cell disorder, but again, the science is pretty far behind on this whole topic at this point. To be clear, I have a specific version of neuropathy that is relatively rare (sensory ganglionopathy), so my experience may or may not be typical.

@punkie1214 One of the challenging aspects of autoimmune disorders is their variability from one patient to another. They may follow a theme, but the specific symptoms can vary widely. I often say that almost any autoimmune disease is essentially a set of symptoms in search of a label; for that reason, I believe it is important not to get over-fixated on the label as it is not necessarily an unambiguous indicator of how best to approach treatment in any particular situation, and people I know have had the "label" revised and changed over the course of time. Gastro issues can be particularly difficult to deal with; I have seen people who had no problem with a particular food one day, and then have a severe reaction the next, which can be incredibly frustrating. If it is MCAS, as with many autoimmune conditions, reducing stress and exercising can help a lot.

I am wondering this myself.
Was diagnosed with childhood migraines, then shingles at age 7, costochondritis, then fibromyalgia, then central sensitization, then idiopathic small fiber polyneuropathy (without biopsy) and occipital neuralgia, bruxism and burning mouth syndrome. I have extreme anxiety, often completely unprovoked.
Lastly was finally diagnosed as AuDHD at age 68.

Have many, many foods intolerances and sensitivities (burning, deep agitated itching, rashes, flushing), temperature regulation issues, extreme sensory hypersensitivities to anything touching my skin, dry eyes/mouth/nose. Even my ears itch inside.

Autoimmune testing has been fully tested twice, negative results.

Now they are testing for histamine and/or MCAS as food intolerances have become more prominent and awful.
I always feel better if I don't eat anything, except for the hunger part. Have lost weight and muscle mass, now age 72.
Many GI issues through the years (leaky gut, extreme bloating, fatty liver, nausea, vomiting, constipation with occasional diarrhea). Colonoscopy showed inflamed gastric lining, inflamed esophageal sphincter, and fatty liver). With each new finding, I have adjusted diet, avoiding more foods or sun or household products.

I have become a recluse as I cannot tolerate anyone's perfumes or lotion. I stopped going to church or any function.
The anxiety issue has become a bigger factor in triggering all this, even when I don't know what could be causing the anxiety; it often just appears with heart pounding, body spasm and pain, jaw clenching, electric zaps and often, migraines which causes fever and widespread fatigue and burning, itching, rashes.

Ice packs reduce the burning a bit and I sleep with softly covered ice packs to reduce burning in low back, pudendal area, elbows, feet and hands.

Since my SFN was never biopsied, I often wonder if perhaps this was severe MCAS all along. Perhaps we could treat the MCAS with better results, as something HAS to get better.

Doctors just seem to think I'm a complaining older woman, pay little attention. However, my symptoms began in my preschool years, so ?
I keep searching for answers.

@jmee82 I have those also. Do you find that IvIg helps?

@logicalperson I think you might be on to something. I was born with migraines. (Also hyper you name it.) When I was checked out by wise allergist (after all the food tests) he checked for Histamine tolerance and found me very reactive. (I passed out.) That summer I received shots to boost my tolerance and I was helped with migraines. (But not the others.) I still have autoimmune issues.

@suetex I know all of my sensory and chemical sensitivities heavily worsened during the 12 years I lived in an apartment that leaked into my bedroom during every monsoon season. I reported this to my landlord every year I lived there, but no action was taken. The last time I reported it (eight months ago), an air quality/mold testing was done and found three types of toxic mold discovered in the ceiling above my bed and around the perimeter of the two bedroom windows (behind bookcases and blinds).
My landlord wouldn't fix it; insisted I move out.

I'm quite certain living in mold for 12 years strongly kicked the MCAS into high gear.

I encourage people to use AI for simple questions like this that are VERY IMPORTANT.

"Yes, there is a strong, recognized linkage between mast cell activation and neuropathy symptoms, particularly small fiber neuropathy (SFN). Mast cells and nerve fibers live in very close proximity throughout the body, creating a feedback loop where they constantly "talk" to each other."

These queries and the answers provided are a good starting point. Then you can do deeper research and ask for informed questions, often leading to the right people to see for help. /good luck!