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Mast Cell Activation

Blood Cancers & Disorders | Last Active: May 27 8:45am | Replies (122)

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@nolife60

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.

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Replies to "Well, I just joined this group & I know it's supposed to be a pick me..."

@nolife60 Hi, welcome to the group. I hope you can gain some knowledge from the discussion here, although I must admit your dilemma does sound very challenging. I myself know nothing about any of it and it is unfortunate that you do not live close to better medical care but I hope you will consider going to a place where you can get some top medical care with real experts to diagnose what your problem is. Did you make an appointment at Mayo or did the length of time for an appointment discourage you? If it did then try a different place. Although I have never been to Mayo myself I know it is a wonderful facility, the top in the country in many areas, but number 2, 3, 4, etc., would also probably be able to help you. Then hopefully once it is diagnosed they can coordinate with your local doctors letting them know what you need in the way of care and how to monitor your condition.
JK