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Aug 21, 2018 · Mast Cell Activation in Blood Cancers & Disorders

I live in St Cloud and have suffered from multiple health conditions over the last several years. At many times I was overmedicated which just exasperated my problems. Trying to get anyone to listen to me was almost impossible. I have been misdiagnosed more times than I can count. I can pinpoint to one time where I became very ill, high fever, severely lethargic, sore throat, headache. I couldnt get out of bed for 4 days and didnt have access to medical care. Ive never been the same. I started having severe gi issues, losing 65 lbs in 3 months. So severely nauseous I couldnt eat and had severe diarrhea almost daily and have had for the last 18 years. I was diagnosed with ibs but have had no resolution. Due to some life events i became severely depressed. I was put on antidepressants which rather than providing relief they started creating a new set of issues. The more I said they werent helping and the more side effects I was having, drs kept adding new medications. At one time i was on over 30 medications. Last summer I was diagnosed with mast cell. Allergy tests came back normal, but biopsies were done and confirmed mast cell. Sometimes I feel like im the one doing all the diagnosing. I have had to research and push for every test ive had. In December of 2017, i figured out that side effects to my depression and anxiety meds were what was causing the severity of my mental health symptoms, to the point of almost ending my life multiple times. Also, discovering multiple food allergies and medication allergies and sensitivities.
They seem to be growing in numbers. I have malabsorption issues and vitamin deficiencies as well. I have reduced my med list as much as possible. Ive even tried medications for mast cell but they only cause more problems. I am currently fighting three infections in my body that ive had since June. No meds are working, only creating more problems. I will be seeing an infectious disease specialist to help me. Im hoping i can gather some information from him about what to do in the future as i struggle with infections, symptoms, allergies and ever-growing side effects. This is definitely a frustrating disorder and can definitely contribute to feelings of hopelessness. I would love to hear from others with mast cell. Side note: Dr Afrin has moved from the U of M to Armonk, NY. His clinic does not accept insurance and is strictly out of pocket.
Best of luck to anyone struggling with this disorder.