Does anyone get neurological symptoms... - The UK Mastocytos...

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Does anyone get neurological symptoms with MCAS or Mastocytosis? (Eg. Numbness, tingling, muscles twitching, etc...)

Suffering_sunny profile image
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Does anyone get neurological symptoms with MCAS or Mastocytosis? (Eg. Numbness, tingling, muscles twitching, etc...)

As well as the changes towards foods, some products, etc?

I am also now showing severe signs of hypermobility and it is causing clicking joints, subluxations, and popping ribs. The pain is unbelievable.

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Suffering_sunny profile image
Suffering_sunny
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Marcilhac profile image
Marcilhac

Hi

I was diagnosed with HSD ( hypermobile spectrum disorder) or hEDS ( hyper mobile ehlers danlos syndrome) some years before being diagnosed with systemic mastocystosis. I had tingling arms and hands for some years and associated it with the hypermobility. I had some advice from a physio on exercising safely and strengthening muscles around joint to keep them stable. His name is Jason Parry and he works both privately and in the specialist EDS hypermobility unit at university college hospital in london.. very helpful. He recommended doing Tai Chi and that has been very successful in reducing my problems. Are you able to get to london to see mr Parry?

EDS hypermobily and MCAS / Mastocytosis seem to be associated . The support group for EDS has just sent out an email newsletter about it. I suggest you join .

Are you getting treatment for mast cell issues.? To my surprise the treatment for that has also reduced my joint snd muscle pain.

Let me know what you think

ehat profile image
ehat

yes it's all part of the big picture. I get all of those things. taking a zeolite detox drops to get mercury out helped with the muscle twitching.

Swissgirl profile image
Swissgirl

MCAS and Hashimotos patient here. I get numbness, tingling and twitching ( and Restless Leg Syndrome) when my iron, B12 or magnesium is too low.

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