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Mast Cell Activation
Is there anyone that has MCA?,I live in Duluth and have just begun all types of testing for this nightmare (I.e. Blood test and bone marrow and 24hr Urinalysis)and they always come back negative in the since of trying to diagnose but I have been dealing with this since last year but didn't know what the heck was going on in my body.It started with just a skin rash at first but since last year till now I have developed allergies to foods I never had and now my body is so sensitive to heat change because within seconds my feet start tingling then swelling starts then my hands start swelling and the full breakout begins (niacin flush type feeling begins and doesn't stop)little scab like rash (like what fibromyalgia patients get)then the felling of vomiting begins.So I am so frustrated because all test keep coming back negative to get "DIAGNOSED"for MAST CELL to see how to treat it,even though I know that it is even the Oncologists and Allergist believes it is MCA so having to be my own advocate and research I have begun the "Low Histamine Paleo Food Change" But trying to cope day to day and for the most part living in my bedroom because I don't want to freeze out my wife or just feeling like my life is being robbed and my personality and to make things worse Dr.Afrin is booked out till 2018 and someone told me here in Duluth that is who you must see,so there goes that idea.I just sometimes want to give up because sometimes this Mast Cell makes you feel like you are loosing your mind.And I have no one to talk to that can relate to this,so there is my ramblings is there anyone who I can talk to that has this "CRAP".
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@danmlee: I am sorry you feel this way but let me tell you I have felt that exact way and still do off and on. I was diagnosed with Systemic Mastocytosis 11 years ago. I went thru a week of tests: bone marrow biopsy, 24 hr urine, labs of all kinds. Saw bone doctor, hematologist and then Dr. Butterfield (all at Mayo). I was on Interferon for 3 years (giving myself shots 3 times a week). I had nearly every side effect they listed. I still struggle from fatigue and depression. I've had numerous broken bones (bones of a 90 yr old)...and in recent years been seen as indolent. It seems I am riding the effects of the Interferon after having a adverse reaction to PegIntron (a one shot a week med) and have been off any prescription medication for Masto since. I do a lab kit sent to me from Mayo every 6 months. I do a 24 hr urine and have blood vials drawn and it's dry iced to Mayo from Fargo(ND). As long as the numbers are as Dr. Butterfield sees fit I will continue in this manner. I am on aspirin. I flush, I have restless leg, I have off and on adverse reactions to various foods and temperatures. I am low in iron(I do not store iron)so am on a lot of iron and calcium...which is hard on my digestive track. Winters are by far the hardest on me with less daylight and cold temperatures. I use a lightbox to help with fatigue and depression usually starting in Oct to April. I have been frustrated with this disease but I know that many suffer much more than I. Am need to feel grateful with the indolent role. Welcome here.
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2 ReactionsHello @@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?