1. < Neuropathy
Profile picture for pennycurious1

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.

Profile picture for marcwall
marcwall | @marcwall | Jul 25 9:24am
In reply to @logicalperson "I am wondering this myself. Was diagnosed with childhood migraines, then shingles at age 7, costochondritis,..." + (show)
Profile picture for logicalperson @logicalperson

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.

Jump to this post

@logicalperson --- All I can say is...God bless you! I'll be praying for you. If anything, you are "certainly not a complaining old women" and anyone that would say that is undeserving of your time. What you've gone through for a "lifetime" is tragic. I wish I could help. Use AI to help navigate the complex histology, morphology, cystology, and biology to hone in on the "dots" that AI can connect for you. It works. AI can remember everything (or every data point) that you'd ever said or inputted to it... IF you have a simple $20 month upgrade (from free). Free is reset every 12 or 24 hours and forgets what you've asked before. It has been a game-changer for me with two blood cancers. I only say that because mine is complex. BUT.... yours is FAR MORE complex and requires a trove of data to be connected and analyzed.

Keep the Faith and Stay the Course!

REPLY
1 reply
Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 25 10:50am
In reply to @marcwall "@logicalperson --- All I can say is...God bless you! I'll be praying for you. If anything,..." + (show)
Profile picture for marcwall @marcwall

@logicalperson --- All I can say is...God bless you! I'll be praying for you. If anything, you are "certainly not a complaining old women" and anyone that would say that is undeserving of your time. What you've gone through for a "lifetime" is tragic. I wish I could help. Use AI to help navigate the complex histology, morphology, cystology, and biology to hone in on the "dots" that AI can connect for you. It works. AI can remember everything (or every data point) that you'd ever said or inputted to it... IF you have a simple $20 month upgrade (from free). Free is reset every 12 or 24 hours and forgets what you've asked before. It has been a game-changer for me with two blood cancers. I only say that because mine is complex. BUT.... yours is FAR MORE complex and requires a trove of data to be connected and analyzed.

Keep the Faith and Stay the Course!

Jump to this post

@marcwall, you're quite right that not all AI tools are equal. Free vs paid tools can offer more fnctionality, like saving previous queries and data, as well as access to newer models. It is also important to keep your privacy and security in mind when using AI.

Here is an article from Mayo Clinic that outlines things to keep in mind when inputting your health data into an AI engine (free or paid versions).
- Can you trust AI for health advice? https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/can-you-trust-ai-for-health-advice/

REPLY
1 reply
Profile picture for suetex
suetex | @suetex | Jul 25 11:51am
In reply to @logicalperson "@suetex I know all of my sensory and chemical sensitivities heavily worsened during the 12 years..." + (show)
Profile picture for logicalperson @logicalperson

@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.

Jump to this post

@logicalperson Mold doesn't sound like anything that we need to be around.

REPLY
Profile picture for marcwall
marcwall | @marcwall | Jul 26 7:06am
In reply to @colleenyoung "@marcwall, you're quite right that not all AI tools are equal. Free vs paid tools can..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@marcwall, you're quite right that not all AI tools are equal. Free vs paid tools can offer more fnctionality, like saving previous queries and data, as well as access to newer models. It is also important to keep your privacy and security in mind when using AI.

Here is an article from Mayo Clinic that outlines things to keep in mind when inputting your health data into an AI engine (free or paid versions).
- Can you trust AI for health advice? https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/can-you-trust-ai-for-health-advice/

Jump to this post

@colleenyoung ... With all due respect, to your comment ..."You're quite right that not all AI tools are equal." ... Of course that may be true, BUT... Not all human comments/beliefs are equal either. Before we encourage people to dismiss AI because of a Mayo Clinic article posted by a single human, we should look at all information practically. Here are the 5 points Mayo Clinic's author suggested in their case "against" AI...

#1 - Diagnosing and treating illness is too complex for a machine --- Well, I don't take the solitary input of AI anymore than I take the singular comment of a human. I take everything in context and based upon my own judgment of what I am reading, hearing, or seeing. MORE information is always better than LESS information. It allows better judgment.
#2 - AI can be wrong --- Of course it can. I correct AI tools often in a "response" to my question or presentation of facts, as AI often can read your question or data/facts incorrectly... misunderstanding your context, grammar, or intent. It's out job to interpret response and challenge it just like we would in a human conversation to avoid miscommunication.
#3 - AI may be biased --- Wow. In what world are humans NOT biased? I find AI far more willing to present data to express both (often 2-4) sides of a possible decision/outcome than humans ever would. AI algorythms are generally designed to avoid bias. Human minds seldom do. Even most higher education TODAY is teaching us to suppress or dismiss critical thinking and open debate. The world has changed and AI is a tool that can open our minds to far more knowledge given reasonable and appropriate constraints or guardrails.
#4 - AI spreads misinformation. It doesn't know what's true and what's not true --- That is absurd on its face. It simply examines all the data it has access to in seconds and humans spew information off the top of their heads as if it is Gospel everyday. There isn't a news outlet or medical journal available that doesn't spread misinformation on a repeated basis, whether intentionally or unintentionally. Truth is in the eye of the beholder. My goal is to have access to the most information I can so that I can apply better judgment.
#5 - People and AI don't communicate well together --- That's not true in my experience. The AI that I use for "information" (calls me by name). The information I gather from it would take me HOURS/DAYS to access by other means and it is expressed openly by AI. It accepts my input freely and considers it fairly. I once had an argument (more of a debate) with it and in the end, it went full circle and agreed with my opinion outright. That back-and-forth "conversation" was more polite and reasonable than most human debates I've had. Mayo's statement is simply "biased" and "unfair," at the very least it shows Mayo is guilty of its own "AI-concern about bias" in #3 above.

I believe we should use AI as a tool to increase our knowledge and then use sound judgment to dictate what we do with that information. To ignore it or to dimiss it because AI offered it is flawed judgment. It ignores the reality that "all information in a vacuum is incomplete." We should make up our minds wisely as that is why God has given us one.

REPLY
Profile picture for crowhunter
crowhunter | @crowhunter | Jul 26 7:26am
In reply to @marcwall "I encourage people to use AI for simple questions like this that are VERY IMPORTANT. "Yes,..." + (show)
Profile picture for marcwall @marcwall

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!

Jump to this post

Has anyone tried stem cell treatment?

REPLY
Profile picture for marcwall
marcwall | @marcwall | Jul 26 8:42am

Clinical research shows a clear connection between Mast Cell Activation Syndrome (MCAS) and peripheral neuropathy—specifically Small Fiber Neuropathy (SFN) among a host of other collateral-related instigators.
Check it out. I hate neuropathy. Prayers with you. good luck!

REPLY
Please sign in or register to post a reply.