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:
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