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Mast Cell Activation

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

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@patrick6726

I'm from Duluth MN as well. Saw your news tribune article as well. But like you have been struggling with this for years now. I was dealing with an undiagnosed chronic sore throat-cough and moderate digestive issues for a few years prior that I never got checked out....at the time it was a very annoying nuisance, I was somewhat miserable, but at least I could function decently enough. It wasn't until after I took something. Just like your cortisone shot, there was a trigger for me. two supplements together, niacin and chromium....took them in the morning, and immediately felt a odd cooling sensation of what felt like water, up my neck, and then down my left arm. Didn't think anything of it at the time. But then like 12 or so hours later, I had the worst psychological feeling I've ever had in my life, just like a sinking death, impending doom, oh my god something is wrong type feeling. Then A few hours after that, wow did things go to absolute hell. Shortness of breath, alternating massive burning sensations and whole body going completely numb, i Couldn't even sleep for the first 2 days or so. Every time I tried and started dosing off, I would get jarred back awake by my body. I thought it was the end. And well, 4 years later kind of wish it was actually considering the life it's given me or lack thereof. Been to emergency room twice since initial onset. Just React to absolutely everything now. There's a mine field of triggers that are just impossible to avoid. And the kicker is that medications-supplements-herbs are one of the worst triggers. How can I get better if I can't tolerate something that's meant to heal me.? I realized less is more when it comes to quality of life.....but it just hasn't been nearly enough. It seems the only way would be to live in a completely sterile bubble in which I wouldn't have to eat or drink anything. And that's obviously not very plausible. Not a lot of hope left. Anyway, I don't know if you'll see this a year or so later. But have you found anybody else in the Duluth area who's dealing with this? And have you been able to improve your health?

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Replies to "I'm from Duluth MN as well. Saw your news tribune article as well. But like you..."

You might find more help by checking into the mast cell disorder groups and discussions on the insight webpage. Or ask the mastocytosis society at tmsforacure.org

Hi Patrick - I am from Duluth! I have been having symptoms of mast cell disease, like anaphylactic reaction, what I thought were food allergies, digestive problems, weakness, fatigue, heat rashes/sensitivity, body rashes, etc. for years with no answers as to why.
After I had my last episode, I went into my PCP and thought I needed to get allergy testing done. I was referred to Dr. Alaaddin Kandeel in the Essentia Health allergy department. After I explained my symptoms and different reactions, Dr. Kandeel told me about Mast Cell Disease. He took his time to explain the disease to me. It was the first appointment I’ve had where I felt the doctor really listened to what I had to say and answer every question I had. He did not make me feel rushed at all. He had blood tests done for me that day. He then had me do the 24 hour urine test, and I am scheduled for a bone marrow biopsy. I highly recommend Dr. Kandeel at Essentia Health. Take care!

I am moving to the Twin Cities shortly and am hoping to find a doctor at the Mayo. Any suggestions are appreciated for Mayo doctors that specialize in mast cell! Thanks!

Please, keep us posted on your results and dr recommendations. This is an extremely miserable whole body issue!