Mast Cell Activation

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.

@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

Welcome to this blog and besides the health issues you have I DO UNDERSTAND how frustrating health, mental or physical, can be. Trying to get someone to understand, to find something, to give you answers...And wanting to give up. I have waves of that. Tired of the medication, tired of doctors, tired of issues...But I talk to someone. Parish nurse, doctor, counselor... Keep fighting. We have to be our own advocates. I've learned that. Getting a referral to Mayo helps. I have systemic mastocytosis. I was diagnosed 14 years ago. It's rare, incurable but treatable and am lucky to be indolent at this time. Please keep fighting for YOU....You are worth it. Prayers...

Hello Everyone,
I am new here looking for a supportive community who understands Mast Cell disorders. I am 34 years old and my vague symptoms started 3 years ago with feeling heat intolerant (always hot/overheating), low grade fever, and weight gain. I thought it was related to hormones because I don't have my period anymore and I have PCOS. Well after my aunts breast cancer spread to her brain in October, i was severely stressed out and my heat intolerance turned into sever flushing in my face and entire body that I thought was an allergy to a food. I went to see an allergist and he tested me for 24hr urine Histamines and that came out positive 8x the normal upper limit. Next he is testing for tryptase and a few other labs. I am in shock that this is happening to me and I need some support and survivor strength. Has anyone thought that their symptoms get worse with stress or depression? Has anyone switched their diet to vegan? Thanks, everyone!

@lookingforanswers2017 I know nothing about this condition but I just want to say you have come to an amazing community of helpful people. I am sure there are people who do know something about this and can understand and perhaps suggest things.
I hope for the best for you in that endeavor and that you will find some real help with this condition.
JK

Hello @lookingforanswers2017,

Welcome to Connect. I can only imagine your worries, and want to reassure you that you are not alone. We're so glad that you've reached out to the Connect community for support. I'm certain that @danmlee @dolan @mjgarr @mepslissy @jools @allergynightmare @jbhmaine @lean1 will return to share their insights with you.

I'd also like to mention that Mayo Clinic physicians have a special interest in the diagnosis and treatment of systemic mastocytosis — mast cell activation syndrome. As part of their research, they have discovered several new syndromes and identified how mast cells and eosinophils play a role in a variety of diseases. You can read more about the program here: http://www.mayoclinic.org/diseases-conditions/systemic-mastocytosis/systemic-mastocytosis-care-at-mayo-clinic/ovc-20324430

Research studies have shown that many skin disorders worsen during stress and are associated with increased numbers and activation of mast cells. Here's an article that reports on depression in patients with mastocytosis: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0026375

@lookingforanswers2017, has your doctor recommended any stress relieving approaches, for example meditation? Have you found it beneficial to change your diet?

Hi Everyone,
I am looking for any help, ideas or support. I feel so defeated. Still NO Diagnosis. I relate to everyone else on the blog that says they feel they are going crazy!! A doctor has even told me that my symptoms are obviously in my head and need to check out psychiatric since my tests are negative….Ok, so here is my story. I am 30 and going on 5 years with dealing with this madness and I am exhausted being my own advocate. I have seen so far up to 12 specialist each in their own specialty to figure out my various symptoms. I have always suffered from severe environmental allergies and asthma, but 5 years ago everything changed. I started getting worst without any obvious reasons. Loosing consciousness after eating, becoming allergic to foods I never been before; drugs as well; brain frog; massive weight gain or lost; body pains (I feel like im 86); face flushing; tongue/face/hands/legs swelling; Gastro issues; persistent fatigue…ect.. you name it I have experienced it all except the typical mastocytosis rash.

I have since had over 12 related ER visits including 4 Idiopathic anaphylaxis reactions; 3 Food related anaphylaxis; 1 insect sting anaphylaxis (then test negative for insect bites both skin and blood). I test negative for all test, allergy, tryptase serum, 24hr urine test, but still struggle everyday with my allergies. I take daily 40mg citrizine; singulair; symbicort nose pray; zantac on/off. Still can’t control these attacks and it is becoming destructive on my life since I no longer go out, lost work, postponed school. I now only eat a low-histamine Paleo white meat only diet and if I dare become lax on my strict diet I pay the consequence dearly.

To complicate things even more, I was diagnosed with a large brain tumor and 3 weeks later had emergency brain surgery 6 months ago. So my doctors at the moment all said that my symptoms have been compounded and now cannot distinguish some of the symptoms thus will not make a clear diagnosis of MCAS without positive tests results. But my symptoms and attacks keep getting worst since surgery.

Last year I was lucky and found a family doctor that believes something is wrong since I presented my medical binder (2inchs thick!!); Records and test after test and research articles for everything I was tested on! I am on my 3rd allergist and he seems to take my case seriously when I see him every 6 months. He mentioned that the Mayo clinic may help us find a diagnosis that deal with difficult cases of MCAS, but I live in Canada and cannot afford airfares and medical test in the US. Is there anyone that knows about funding, or test kits for my doc? Or even the cost of being diagnosed? Any resource? I’ll take any ideas or suggestions and even words of encouragement. ☺

I understand that a diagnosis bring little relief since there is no cure. It would stop the ER docs from thinking I’m the crazy lady, or worst! Delay treatment like I had a few times (cause they never seen or heard case like mine before) when I present with atypical allergic reactions.

In my experiences very few doctors know about MCAS and fewer know how to treat it and less diagnose it. ☹

I’m so sorry for the long story but I feel everyone can relate because cases of MCAS are beyond complicated.

i'm exhausted and feel defeated

Yes! My doctor told me that symptoms of MCAS do get worst with stress.... being negative or positive stress, the body does not discriminate good or bad. Stress is stress. He told me try and control my emotions, stress levels by any means including my anxieties as it escalate my attacks. Meditation, mindfulness and weekly counselling. I struggle everyday with this! I can even be overly excited since it can trigger an allergy cascade. My emotions have to be as bland as my food. Also, I only eat white fish and white meat on a paleo diet, gluten free and preservative free including soy. This seems to help me have somewhat of a functional life.

Does anyone know if the amount of medication that I am taking effecting my tests results? making them come up negative especially during an attack where i take benadryl by the mouthful, beanery pills and epipen? both my family doc and allergist think that taking me off my meds is life threatening even for a few days, but how will they be able to get accurate results? Also, it makes it difficult cause none of my symptoms are consistent since they come and go.............

I read that if the urine and blood tests are not put on ice immediately they will come back normal... hope this helps