Any connection between Neuropathy and MCAS?

@pennycurious1 I don't have any experience other than having small fiber peripheral neuropathy but there does seem to be a connection between the conditions. Here's just one of many research articles on the topic:
-- Mast cell disorders are associated with decreased cerebral blood flow and small fiber neuropathy:
https://pubmed.ncbi.nlm.nih.gov/34648976/
@blaira started another discussion and mentioned having MCAS and small fiber neuropathy along with other conditions - https://connect.mayoclinic.org/discussion/very-elevated-gdf-15-suggestive-of-mitochondrial-disease/.

Good morning. I also have mcas, hereditary alpha tryptasemia syndrome, and small fiber neuropathy. Yes, a large percentage of us masters have small fiber neuropathy as well. I have tried lyrica but my blood sugar raised too much and I am also diabetic. Now trying neurotic slowing. It’s so sedating. My sfn only acts up when I am having a major flare which seems to be every day to a certain extent. My triggers are environmental. Hope this helps.

Welcome @nurse1963, Thanks for sharing your experience. I have idiopathic small fiber peripheral neuropathy but no pain, just numbness and some tingling. I'm glad to see that you have connected here with @pennycurious1 and @blaira. You mentioned environmental triggers, do you have any suggestions to help manage environmental triggers to reduce flareups?

Yeah live in a bubble lol! I am allergic to cat, dog, dust, mite, mold, grass, trees, ragweed, plantain, sorrel, wasp, and Yellowjacket’. Also heat and strong smells will trigger me. I try to follow a gluten free diet but that is easier said than done. It’s so hard when they say to avoid your allergens and everyone you know has at least 1 pet. I don’t just sneeze anymore-wish that is all that I do. I failed to mention that my dr did genetic testing on me and I also have a NLRP 12 deficiency so I have all 4 of these disorders working at the same time. During a large reaction I feel dizzy, headache, tachycardia, stomachache with diarrhea, flushing of face and chest, sweating, brain fog, muscle cramps. Then if you add the small fiber neuropathy on top of it I experience skin burning, itching, and pin pricks. Like I said daily to some extent. Xolair was always my go to med but I did try tezspire(sp) that seemed to be stronger. Had to get off it because of side effects. There is a new med that the FDA approved that my Dr wants me to try. It’s all about try and error.

@nurse1963
Yeah, I feel you! Add daily crippling pain foot to shoulder and you have got me! Except that I have histaminose without being allergic. So weird!

Hope you find proper meds soon!

Yes, I feel there is but finding a doctor who understands the connection is a problem. There are mast cell facebook pages for many states and general ones. I would suggest going there.

@nurse1963 See my comment below about mast cell facebook pages. Yes did these problems run in family on motber's side?

I see an allergist/immunologist and he is wonderful. I’ve been to Philly a few times to see a hematologist and an allergist. Then I saw Dr Maryanna Castells in Brigham and Women’s hospital in Boston who diagnosed me with the mcas. Funny thing is my present Dr was just 45 minutes away from where I live.

OMG yes! Both my mother and my son have the hereditary alpha tryptasemia syndrome. My mother has no allergies but my son was on allergy shots for 5 years because he also has multiple allergies. We all have the same problem but we have different symptoms.