The Diagnosis of Mast Cell Activation Syndrome (MCAS) Presented by David Saperstein, MD.

The Diagnosis of Mast Cell Activation Syndrome (MCAS)
Presented by David Saperstein, MD.

(MCAS) Mast cell activation syndrome is a condition where the allergic system goes haywire. This occurs in many patients with EDS, POTS, or Dysautonomias. Individuals with MCAS are prone to unpredictable rashes, hives, or skin sensitivities.
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MCAS can be hard to diagnose. There are blood and urine tests, but these are frequently normal. Through the use of antihistamines, mast cell stabilizers, and other medications, the symptoms of MCAS can often be brought under control.

Dr. Saperstein worked with a group of mast cell activation specialists, an effort led by Dr. Lawrence Afrin to propose new diagnostic criteria to update a Diagnosis Journal that was first published on January 22, 2014. This journal is called Diagnosis of Mast Cell Activation Syndrome: a Global "Consensus-2". It is a must-read for all neurologists.

[lauriekline]

Thank you for your information regarding mediator testing. This is the gold standard for mcas dx. My mediators are Chromogranin A, Histamine and Heparin. I have MCAS, POTS, HEDS3, Familial Achalasia, T2DM, PCOS, and FIBROMYALGIA, TRIGEMINAL NEURALGIA, FOCAL EPILEPSY, embolized AVM from intraparachymal hemorrhage of the occipital lobe. Educating the public about this is a must. This is complex multi system polymorbidity. It took me 7 years to figure it out then 7 more years to get finally expertise. Help from Dr. Afrin, the Masonic Cancer Center at university of Minnesota and all the staff at Autonomic Center at Vanderbilt University and The legend late Dr. David Kem at my university of Oklahoma. Because of the education I received is why I am still alive. A physician knowledgeable in mcas is hard to find.

[geekgurl]

Maybe it's my autism, but i find background music very distracting.

[brookcgobel]

I am just getting a referral to someone in hematology! I’ve had POTS for almost ten years, while all of these weird symptoms kept coming up that didn’t completely add up.

[OzarksUSA]

I didn't have any tests for MCAS, I was diagnosed clinically by a leading neurologist who is head of his department and specializes in POTS, as I have POTS and EDS. I at first balked because he didn't run lab tests for MCAS like he did POTS (and he confirmed my diagnosis of hEDS with the new 2017 guidelines, my diagnosis before was before 2017). The more research I do, which he encouraged, the more I'm thinking he might be right.

[heidihui]

I did not have any tests done for MCAS, but by all of the symptoms that i have had for more than 20 years, my Naturopathic doctor gave me Nalcrom to treat me.This MED is for MCAS, and it worked very well for me. So, i stopped taking the med, and now i am very sick again . Need to take this med again. The Dr who asked me to take this med told me i have MCAS . By the way, my MCAS Genes are terrible, most of them are mutated, and all of these mutated Genes have been expressed since i was young, ,sick for life long time already .

[Cathy-uxxd]

Great timing as I wait for my test results (tryptase). Thank you ❤️🦓

[UHFStation]

Didn't say anything about what diseases does symptom wise or its cause.

[misslu]

So what are the symptins? What does this even mean?

[tonyization]

My prostaglandin d2 was elevated twice. The second time was even higher. Is that particular test a good indicator of MCAS??

[harlequinhead]

What kind of doctors do you see to help diagnose?

[matt]

What about histidine?

Are 1-Methylhistidine or 3-Methylhistidine elevated in mast cell disorders?

I have a suspected mast cell disorder with largely normal lab findings. The only things that bring up a ? are
high levels of sIgA in stool, high levels of those two amino acids above in an organic acids test, and a single instance
of a tryptase going up from 3 to 5 during a reaction ( which is below the 20% + 2 gold standard ).

[marke.haller]

The gastro link is interesting. Started out with POTS diagnosis and ended up with Adrenergic Orthostatic Hypotension, although the TTT and QSWET had a few ...flaws. I've had GI issues for decades. Any links to POTS/MCAS/Gastro nexus?

[dgsmith]

My typtase changes every doctor visit, but not quite to the degree of 20% plus two. They keep moving my threshold up. That's stupid. Did find out I have no VitD. Doing better but Dr. said it would be a year to get the level up high enough.

[bathedinshadow]

How likely is a mast cell issue if your only symptoms are uncomfortable breathing, stuffy nose, and persistent sore throat. Ongoing for over 2 years. Can't find any links. I've been down MANY MANY other paths with no answers. I've tried the low histamine diet as well as quercitin for a month, with no improvement. I just can't seem to rule this in or out.

[dfpsVoices]

I was just diagnosed with mcas, could my hoshimoto disease be flaring this up?

[matt]

Why do allergists still talk about immune responses as if theres only four types as type one requires ige antibodies? mast cell disorders cause type 1 like responses withour ige antibodies so it seems like their model needs to be revised