Anyone familiar with MAST cell activation syndrome?
Is anyone familiar with MAST CELL ACTIVATION SYNDROME? Read an article on it the other day! Had never heard of it before! have been suffering with diagnose(?) Lyme Disease for the last 6 years! Mast Cell symptoms are very similar to ! CI keep going downhill? Can anyone help?
Thanks, SUNDANCE aka (RB)
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I was born with migranes (as my Father and his Mother before him) and in the 50s my Mother decided to take me to drs to get to bottem of them. She didn't have headaches and thought they were a coping mechanism. Many docs later I was at an allergist and after all the diets, blister skin tests he decided that I had an histamine sensitity triggered by a corn allergy and Proved it by giving me a shot of histamine designed for my body weight. I was to get a headache he said. In about 2 minutes, I passed out and woke up with a torniquit on. The treatment was to give me ever increasing histamine shots (3 a week) for the summer. Did help until I got my hormone change, and then I had another reason to have migranes. They seem to be influenced by estrogen levels. It wasn't until HRT that I got a handle on them. I really wonder what todays docs would make of it.
There is a lot of misinformation about MCAS online. Id avoid most of the online support groups that are not linked to legit or official sources. There are a lot of self diagnosed people in those who are giving out bad advice and misinformation.
Mayo clinic Rochester also does not generally treat MCAS specifically and seems to focus on Mastocytosis only which is very different than MCAS.
Symptoms of MCAS are similar or the same as so many other conditions it can be hard to get that diagnosis.
I am a Connective tissue disorder EDS and MCAS patient who meets the diagnostic criteria.
Its common for those 3 to be linked together.
I would start out by seeing your primary care and discussing your symptoms. Id ask to get some baseline tryptase levels done over the course of a few months to show what your baseline normally is. Draw those only when you arent having symptoms or at least not having a flare up or reaction.
Then see about a referral to allergy and immunology.
Medications like Zyrtec, Pepcid AC can be helpful. There are others as well but you need to work with someone familiar with this condition.
Avoiding triggers is really the key. Its all about management.
Try to avoid high histamine foods , alcohols, etc..
My daughter is 49. She was diagnosed about 6 or 7 years ago. I may be off on that. She was diagnosed by a neurologist at Mayo Scottsdale. She was diagnosed with the "trifecta"--mast cell activation, Ehlers Danlos, and POTS. She is doing well. Takes her meds and a Xolair injection for hives every three weeks. She also has Hashimotos. There is a book named Never Bet Against Occam by Dr. Lawrence B. Afrin. He is a doctor that other doctors referred their patients to when they could not make a diagnosis. He goes through numerous cases he finally attributed to mast cell. He saw so many similarities in symptoms with these hard to diagnose cases. He also sees a connection to fibromyalgia. I have the book, ordered from Amazon, with yellow sticky notes all over the place. It was published in 2016. There are videos online explaining mast cell. I can't remember the title. Haven't watched in a long time. They discuss the basics. I really recommend Dr. Afrin's book.
Please see my comment to wisfamily.
Funnily enough, I was diagnosed with MAST cell activation syndrome yesterday. I also have fibromyalgia, connective tissue disease, migraines, neuropathy, visceral hypersensitivity, along with many many GI issues including IBS, GERD, and after having a Nissen fundoplication 360 in my early 20’s (at JHU) I needed a total colectomy and several other GI surgeries after the colectomy(all surgeries after the Nissen were done at Mayo) bc the surgeon at JHU who damaged my vagus nerve among other things. My neurologist has sent me blood work orders bc he thinks I may also have POTS, Ed’s, or stiff person syndrome.
I realize now that I’ve just listed my diagnoses without any real comment 🤦🏻♀️🙄