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Nov 4, 2017 · Mast Cell Activation in Blood Cancers & Disorders

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………….

Nov 4, 2017 · Mast Cell Activation in Blood Cancers & Disorders

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

Nov 4, 2017 · Mast Cell Activation in Blood Cancers & Disorders

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.