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danmlee (@danmlee)

Mast Cell Activation

Blood Cancers & Disorders | Last Active: 4 days ago | Replies (108)

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@kanaazpereira

Hello @@danmlee,

Thank you for sharing your story; I’m truly sorry that you are going through such pain, and I want to assure you that here on Connect, you will find a wonderful community to talk to, and we will do our best to try and find some answers that may help you.

Here is some detailed information on Mast Cell Activation Disorder: http://bit.ly/2jkDjWH; and if you would like to read about Mayo Clinic’s approach, please click on this link: http://mayocl.in/2jtjyyB

In the meantime, I would like to introduce you to @dolan, @mjgarr, @denisefeddersen, @mepslissy, @jools, who have all talked about MCAs and/or mastocytosis, and I hope they will return with some advice.
Since MCAS is often found in patients with Ehlers–Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS), I wonder if one of our mentors, @kariulrich would have any insight?

@danmlee, when it comes to health, you are your best advocate; have your doctors ruled out other underlying conditions? Other than the diet, how do you manage your symptoms?

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Replies to "Hello @@danmlee, Thank you for sharing your story; I'm truly sorry that you are going through..."

Thank you so much,I just wonder if there is anyone that lives in Duluth that has been to Mayo for this insidious disease,I feel like I am alone in this except for my wife but she is at the point where she doesn’t know what to say or do she feels helpless to,just to be able to talk to someone and they could say “Oh man I get ya or here is why that happens”,I just don’t know what to do or not do,I know my triggers (temperature changes are huge and stress and it is this food allergies thing I don’t get)I like being active and am ADHD and have a mild TBI so just trying to trudge thru this mud is not working.

I have just been diagnosed with the MCAS and POTS. I have been put on supplements and vitamins to help with the mast cell and immune system support. I have severe psoriasis and chronic fatigue syndrome. I work a full-time job and I am struggling at work and at home. I am still trying to wrap my head around all of this. I am very thankful that I have a very good doctor and I finally know what is wrong. I would love to learn more about this. I am just getting into the diet part of this. I would love to learn how to manage symptoms as well.