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Sep 7, 2017 · Mast Cell Activation in Blood Cancers & Disorders

Well, I just joined this group & I know it’s supposed to be a pick me up blog but, I am more discouraged than ever. My Story is very Complex but, I will try to cut to the chase. Almost 4yrs ago I developed symptoms of Burning Mouth Burning Tongue. Don’t ask me if I have tried this or that (don’t mean to be rude) because I have a closet full of everything. I knew at the beginning if this didn’t go away I was in for some major complications. Almost 4yrs later 6 or more Dr or variety of Specialists No one can tell me what is wrong. I have 5 or 6 (at least) auto-immune diseases have developed one right after another for the last 25yrs and also seem to attract the very strange & rare illnesses. I have had this Mouth problem Pain 24/7 I have managed to deal w/all the others but this. I have had this long enough to experience so many unanswered problems which I believe it to be either cardioid symptom or Mast Cell Disorder. No I’m not a Dr but, I have tried to be my own Advocate & learn as much as I can especially when the Dr’s have no clue. I am dying a slow death want to give up but, that’s another story. I have so much wrong with me the Dr’s just don’t want to have to deal. I live in a rural area can’t get to someone who might have some pity on me. I don’t have the Support System I use to have and I don’t even know what kind of Dr I would see if I could get there. I have many symptoms of either disease & I know my body we all do. But this has just seemed to manifested in my Mouth. I will eventually die from complications of this I just know it. After hearing about the length of time to even be seen at the Mayo Clinic is sad. I hope every night I will just go in my sleep. I’m so tired & very very tired of going through the pain. I went to the Baylor Stomology Department & the Dr spent 2hrs w/me & ended up saying he had never seen this before. My Tongue looks like I have severe geographic Tongue. Found out last year the lesions are in my esophagus from a Endo procedure. The biopsy could not determine if it was viral, bacteria., or fungal which I don’t understand at all. Sorry to not be positive but this is just not living & from what I have read this Ridiculous Mouth problem is never going away. I am sorry for the terminally I’ll but sometimes the chronically I’ll suffer so much more & even most their life. I do hope that all of you find some way of having a functional life. Hugs to all of you.