Mast Cell Activation

@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

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.

Hi @lean1,

I'm truly sorry to learn about your daughter, and as a mother I can imagine how worried and helpless you must be feeling.

I found this journal article online, and I would sincerely encourage you to view it:
"Pharmacological treatment options for mast cell activation disease" http://bit.ly/2uwUcmj

Hang in there, @lean1...and "lean" on the Connect community; we're here to support you.

Does anyone know about the progression of mast cell activation disorder? I'm back speaking about my daughter. Last October she was a vibrant young wife and mother and now she is a shell of a person. Her list of low histamine/Nicole free foods is getting smaller by the day due to reactions. The sun and heat make her react. She has gastritis and severe constipation where she is having to do daily enemas. She is on quercertin and just started keto fin ( my spelling my be totally wrong on these) but she started that yesterday and got blisters on her lips and a tight throat so I fear she may be allergic. She's allergic to all the supplements she used to take and when I spoke to her last night she told me the only time she's not in pain is when she sleeps. She's very depressed. I feel like she's slipping away. She has an appointment in august at Mayo but my fear is she mentally won't make it that long. Why does it seem like drs don't take this seriously?

@lean1, I hope somehow, someway, your daughter will find someone who can help her get relief. I remember seeing one of those news type of shows on TV a while ago (years ago) that said the things they use in building houses can cause severe allergies. If I recall correctly once sensitized the allergies get worse and people who had them had to move into homes with no carpeting, and all natural material. I cannot imagine going through all of this. She is so fortunate to have you there for her.
JK

How terrilbe you are probably desperate by now could i suggest you contact theothersong.com it is a state of the art homeopathy centre in India they are incrediable at finding cures. They may be able to direct you to a high up homeopath in your area.

Yes the allergies are severe. She had to leave her job because she became allergic to the tools, soaps, gowns etc. she was a blistering mess. She has reactions to water because of nickel in the pipes as well as when she touches door knobs, shopping carts, eating utensils etc. she has had to discontinue all her supplements she was taking, important ones as she has the rare mthfr gene mutation and also has thrombophilia. Foods have been a challenge. She has a small child and she suffers from a lot of fatigue and joint pain so I try to help as much as I can. Thanks for all your responses

When I last saw Dr Butterfield at Mayo more doctors and physician assistants were being trained in Masto and related conditions. My symptoms vary almost daily One day I can eat strawberries and the next I'll have a reaction....It's a crap shoot for me. With my low iron and needed protein and calcium for bones...I usually choose to suffer any consequences since I need the other for over all health and well being.

Hello @lean1, and welcome to Connect. I'm so sorry that your daughter is going through this. I do hope @danmlee @dolan, @mjgarr, @denisefeddersen, @mepslissy, @jools, will join in this conversation too.
@judeeo, I noticed your mention of mast cell disease in another group; do you have any insight for @lean1?

Here's a link to The Mastocytosis Society, that has detailed information: https://tmsforacure.org/overview/
From what I read mast cells can result in severe allergic reactions; @lean1 how is your daughter managing with the allergies?

Thanks for your input, any information is appreciated. I will make note of these things