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Diagnosed, Finally, After Nearly Three Years. Mcad.


LindaJoy
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Hi, everyone.

I just wanted to tell all of you that I finally have a diagnosis, just in time for Christmas. I saw a mastocytosis expert in Cincinnati, and he diagnosed mast cell activation disorder. Yes, MACKS MOM, you've been right all along! :) Dr. Castells, the expert in Boston, has done a tentative diagnosis, as well, over the phone, hearing my symptoms and knowing some of my test results, etc. I'm now undergoing medication trials. Not fun. Most meds are mast cell stabilizers, histamine blockers, etc., and my body just doesn't like them. I can't even handle Zantac.

Well, to the pickle I'm in. As I said, I was diagnosed on Christmas Eve by a doctor in Cincinnati. I didn't even know this doctor existed until the day before Christmas Eve, when I was so desperate, my health had become so bad (my throat is swelling nearly shut every time I eat anything), I called a member of the Mastocytosis Society and she recommended that I call this doctor, so I did. I didn't think he'd agree to see me so soon, but he did. On that same day, a mast cell expert, the best in the country for MCAD, called (I'm supposed to see her in March, and we've been trying to get that appointment moved up) because her nurse, whom we've been calling, told her how bad I am, and she recommended meds over the phone (one has to come from Canada and we even have it ordered). I am now doctoring with two doctors. Not good, I know, I know, I know. I like the doctor who diagnosed me, as he really cares, yet he's piling on the meds like they're candy and I am not doing well on many of them. Dr. Castells, on the other hand, is the top doctor in the country, she seems to get that I have to go slow with meds, but she's many states away from me (in Boston, while the other doctor is here in Ohio) and many months away from an appointment.

What would you all do? I hate this, but in a way, it's funny how, for years, I've had no doctors to help, and now I have one too many. Geeze.

Thanks. I hope this finds all of you doing well and having a happy holiday season.

Hugs.

Lindajoy

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Hallelujah, Linda Joy!!!

I dropped a line on the masto listserve, but I wanted you to know that I feel so happy and hopeful for YOU! You will love Dr. Castells. I hate that you have to wait so long to see her. You really are in a pickle with your double doctor quandry. Dr. Castells is great, but hard to work with long distance. You really have to pester her to get your questions answered. For that reason, I'd probably stick with your local guy and really work with him. MAKE him understand that you need to try ONE new med at a time to see how you tolerate and react to that. I have a local allergist, formerly from Mayo AND I see Dr. Castells when we can't figure something out. He's wonderful and defers to her treatment decisions (even though they are similiarly educated and both at the very top of their game.) You have a very similiar set-up. With some effort, I'm hoping you can make it work for you.

Of the meds you mentioned, I take benadryl, atarax, and zantac with little problems. (I don't take the other meds you mentioned.) Benadryl is amazingly ineffective for me. I'm learning that zyrtec and atarx work so much better when I'm reacting to something. Atarax wires me a bit- different reaction than most folks. I have the same problem with zantac. I break my zantac (ranidtine) into 2 doses- one in the AM and one in the afternoon. If I take that too close to bed, I can't sleep. When I'm as bad as you are, only a short dose of prednisone will break that cycle. I understand why Dr. Bernstein doesn't want to try that- I read Linda B.'s horror story. Maybe find out what dose she was taking when she had that reaction. Sometimes if I add as little as 10mg a day (with my other meds) for a week or 10 days, EVERYTHING calms down for me.

I'm sorry I'm not more help, but I'm so happy that you are on the road to figuring this out.

Big Hugs-

Julie

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I think you can make it work having one local and one long-distance specialist. I am doing that for my POTS doctors and it is working; I think it's really the most practical thing to do when you have a top specialist on your case but they are not local and don't necessarily have as much time available for every patient. Hopefully, you can get the docs to work together comfortably with each having an important role in your care.

Congratulations on getting dxd and I hope you start seeing improvement in your symptoms soon!! Hugs!

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