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Any connection between Neuropathy and MCAS?

Posted by pennycurious1 @pennycurious1, 1 day ago

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.

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John, Volunteer Mentor | @johnbishop | 22 hours ago

@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/.

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nurse1963 | @nurse1963 | 22 hours ago

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.

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John, Volunteer Mentor | @johnbishop | 20 hours ago
In reply to @nurse1963 "Good morning. I also have mcas, hereditary alpha tryptasemia syndrome, and small fiber neuropathy. Yes, a..." + (show)
Profile picture for nurse1963 @nurse1963

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.

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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?

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