Outside of this forum I was having a "discussion" (online) with some friends about my interactions with Dr. Castells. I wanted to copy it here because I thought it might be useful not just for anyone dealing with her, but for anyone reaching out to a researcher/specialist in another state or another country.
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I've had experience with Dr. Castells in three different phases...
- Before I became her patient
I e-mailed Dr. Castells in the fall of 2009 after a particularly frustrating appointment with my local allergist... the one who diagnosed me with chronic autoimmune urticaria. I'm still working with him and still respect him because he's willing to learn (a rare quality!), but he's not a researcher and doesn't really understand how to deal with a systemic mast cell disorder. I'm teaching him
Anyway... at that time I was really struggling with day-to-day symptoms (POTS, nausea, diarrhea, joint pain, fatigue) and he didn't think I needed anything besides antihistamines. I had never met Dr. Castells, but she very graciously e-mailed me back. She advised me to get a total IgE, a baseline tryptase, and to try Gastrocrom. I already had the total IgE... I went to my local GP to beg for the tryptase and Gastrocrom. God bless him. The man is 81 years old and doesn't really know anything about mast cell disorders, but he believed me and was willing to help as much as he could... and when I said "cromolyn sodium" he realized, "Oh... this is a very old and safe medication." Nothing radical.
- When I became her patient
By the time I went to Dr. Castells I already had a mast cell diagnosis and tons of test results. What I didn't know was how to get my abdominal angioedema under control. After waiting so long to see her I was kind of surprised at how quick my appointment was (no more than half an hour), but she did photocopy all of the test results I brought and set up an additional GI consult with Dr. Greenberger. I told her, "I know what an authority you are and I trust you." I was really surprised when she put me on an elimination diet, but by golly... it worked. Dr. Greenberger's advice was spot on too. I had a longer and more supportive appointment with him. Sweet guy. Dr. Castells did not remember that we had been in touch by e-mail.
- After leaving Boston
Since my appointment I've had three "phone consultations" with Dr. Castells. These have been VERY short (no more than five minutes). Since the elimination diet worked we haven't needed to do any more tests or adjust my medications. She did ask me if I thought my current prescriptions and doses were doing enough and I said "yes," so at least she was open to the idea of making adjustments if I was still suffering.
Dr. Castells can't order any tests or prescriptions for someone she hasn't seen in person... I had to go through my local doctor for that. Looking back, I had been going through relatively mild episodes of anaphylaxis for four years before "the big one" hit in February 2009. The first part of my diagnosis came in August 2009 (chronic autoimmune urticaria), the second in January 2010 (systemic, autoimmune mast cell disorder), and the third in 2011 (allergies to shrimp, ragweed, and latex, plus acquired abdominal angioedema). In each case, I didn't make any progress with doctors until I personally educated myself... for newbies, that is by far the most important piece of advice I can give. Educate yourself. If you're not educated, how are going to understand your doctors and whether their advice is good or not?
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Hugs to everyone out there going through the difficult journey to better understanding and better health!
Heather