Mast Cell Activation

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!

Hello @smbryce1,

I sincerely appreciate your follow-up of posts in the Mast Cell Activation group on Connect – welcome!
You mentioned, "...after I posted this it showed me lots of replies," and as moderator of this group (Skin Health), I thought I'd also clarify that it's an active conversation, especially with the shared experiences and valuable responses offered by other Connect members in this discussion. I also hope that @danmlee has found good resources and some relief for coping with MCA.

The benefit of sharing in the community is that you can receive information and support from a knowledgeable group of people; it is awesome that you have chosen to be a participating member of the Connect community; would you be comfortable in sharing more about your treatment and what has helped you led a better quality of life?

Unfortunately a lot of the specialists are being overwhelmed by patients who think they have mast cell disorder, many of whom may. This is part of what is making them set strict and often seemingly unreasonable limitations. Have you checked out Facebook groups for mast cell activation many patients are willing to message each other there or on insight with recommendations what to do next. Doctor Afrin switched to conscierge so he’s only out of pocket and thus out of the price range of many. Mayo does have a mast cell clinic but getting in can be tricky and they currently seem to be focused primarily on mastocytosis

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

I would definitely take that to your doctor asking what it means. Also with your medical history as listed I would look into hereditary alpha Tryptasemia testing. It’s new and thus currently only available out of pocket, but any doctor can order it and I beleive it’s around $160 out of pocket. It’s a new genetic test for a disorder they recently named and it includes a cluster of disorders such as Eds, pots and mast cell disorder or severe allergic reactions

This is true for certain tests needed for mast cell disease diagnosis. And mayo also says the same urine tests can be done without refrigeration if properly preserved with a certain chemical in the urine collection jugs

I’m sorry to see no one has replied to you since 2017 (edit: after I posted this it showed me lots of replies). I joined just to make sure you have since found resources. If not I recommend you look into the support website called insight and look under mast cell activation you will find several groups an one is the mastocytosis society who is also found at tmsforacure.org and also check out mastattack.com which is a searchable blog written by a scientist who turns out to be a mast cell patient.

Ps I was a mayo patient but after they told me I had a mast cell activation disorder they only were able to help me somewhat so I have since gone elsewhere and recieved more treatment and have a much better quality of life now.

@kedening I am not clear on why they would not help you, are you opposed to a bone marrow biopsy? I am a transplant patient so I know nothing about "mast cell activation", but if you feel there is no need for that biopsy perhaps another hospital would be more accepting of a patient who has not done that. My hospital of choice is Mass General (I presume you are in the New England area). They have been wonderful and at this point I have been to many doctors there rather than the doctors in my own area because I don't find them to be helpful or as knowledgeable.
JK

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?

Hello All, I am doing research to find a clinic that will accept patients without a bone marrow biopsy. My allergist and I tried the Brigham Hospital in MA, but they were super unhelpful in the process of getting in. Even the staff wouldn't talk with my doc! Its such a frustrating process to get in where there is experienced people who really can speak on this disorder. Does anyone have suggestions of places they have tried or tactics in speaking with specialized places? What does Mayo offer in terms of this?