mast cell disease

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Needing a Mast Cell Treatment Center… Any Ideas?

Does anyone know the best place to go to get treatment for mast cell disease? Anywhere. I’m in awful shape and really need help but can’t get proper treatment so far.

#MastCellActivationDisorder #MastCellDisease #MultipleChemicalSensitivity #Systemicmastocytosis #MyeloproliferativeNeoplasms #ChronicMyeloproliferativeNeoplasms

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Electrolytes Easy for GI symptoms

Does anyone have any suggestions on electrolytes that are easy to digest or good for digestion issues? I have POTS and Mast Cell Activation Syndrome and some pretty severe GI problems currently. They stopped making the only flavor of Body Armor that I could drink without reacting. Maybe people with #IrritableBowelSyndromeIBS #InflammatoryBowelDiseaseIBD #CrohnsDisease #UlcerativeColitis #Gastroparesis have some things that have worked for them?

#LymeDisease #PosturalOrthostaticTachycardiaSyndrome #MastCellActivationDisorder #MastCellDisease #Migraine #Depression #Anxiety #Autism

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Clear liquid for colonoscopy? What do I drink?

#MastCellDisease . I'm having a colonoscopy, endoscopy. I have to be on clear liquids for 2days. I have Mast cell activation syndrome. The list they gave me I'm allergic to everything but water. To put it bluntly What the heck I'm I suppose to drink for 2 days?????
Water for 2 days?
Any ideas

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the never-ending balance #AddisonsDisease #MastCellDisease

I need to vent. Having both Addison's Disease and a severe systemic mast cell disease has truly started to take it's toll on me.

In order to treat my systemic mast cell, I have been put on #cancerchemotherapy and I wish I had known more about my regiment before starting. currently on a regiment of 2-Cda, a once a month for 5 days treatment of the drug. balancing all the different steroids, how to cortisol pump and stay out of hypertension from pre meds of solumedrol being so high have left my body unrecognizable at times. I often feel as though so little thought is put into my need for fludrocortisone I get so so sick coming off the high dose IV solumedrol to liquid prednislone to my cortisol pump and daily fludro, I have complete and total adrenal failure. And honestly just feel wiped out. I'm not having anaphylaxis to everything anymore, but still on the TPN daily.

Does anyone else feel like they just need a mini break from all the crazy? From the constant blood pressure and pulse ox checks? The constantly accessed port? I would give probably anything for an hour, heck 10 minutes of feeling safe deaccessed from my port.

the chemo is slowly working, and for that I am hopeful. I miss eating food, I miss drinking water.


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Any suggestions on what to do to break free of a cycle of migraines and exhaustion?

I have suspected MCAD and multiple allergies, and have struggled with regular migraines since childhood, (now I’m in my 40s). Past 2 weeks I’m constantly exhausted and having migraines most days and I’m desperate to break this cycle.

#MastCellDisease #exhaustion #Migraine #BrainFog


Living with MCAS among other issues...

Hello there! I was diagnosed about 3 or 4 years ago and getting answers I was looking for. Problem was it left us with more answers. I am working to find a treatment that works best, but it seems that this is getting the better of me. I am wondering what experiences other people have with this diease and some dos or dont’s or really advice! #MastCellActivationDisorder #MastCellDisease #elhersdanlossyndrome