Dr. Castells overview on MCAD: presentation to CSF

I wish I could actually go ahead and embed this talk, but here is the link anyway.  It’s an amazing talk Dr. Castells gave to the Chiari & Syringomyelia Foundation a few years ago.

I’d seen this super-informative talk before meeting with Dr. Castells.  However, now that I’ve had an appointment with her and am watching it again, it makes a lot more sense.

Dr. Castells is super, super busy so when you *do finally talk to her, it’s really important to have all your questions ready.

So I’m going to watch this and take extensive notes before I see her again.

Notes and Questions before my next visit:

33:16 Distinguishing between mono-clonal and non-clonal MCAS

Research from Dr. Escribano in Spain:

Urticaria, angioedema, dyspnea –> likely non-clonal

Syncope, presyncope, hypotension –> CKit Mutation –> clonal.  Would need bone marrow biopsy

If my C-Kit is negative, does that rule out a clonal disorder?

23:00 Various medications

Mentions a few things we never discussed:

Ansiolytics (anti-anxiety)

COX-2 Inhibitors for pain (like Celebrex) — she told me at my appointment it was only for mastocytosis?

Medications for subsets of patients:

aspirin for those with high prostaglandins. can be hard to use, desensitize patients to aspirin

anti-leukotrines for those with respiratory symptoms, skin symptoms, swelling of tissues, bronchospasm (like singulair).

corticosteroids only used for mastocytosis

ask her how bad it is to use benadryl often

 

 

 

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