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Personal Experiences With Mcad Experts?


DoozlyGirl
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Wondering if anyone is willing to share experiences with Dr Castells or Dr Afrin, two of the most recommended MCAD experts on several websites. Has anyone seen both specialists? How much time did each spend with you and how long was the wait for an appointment? Any other details would be much appreciated.

Thanks for your responses, Lyn

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Hi Lyn,

I am a patient of Dr. Afrin's. I traveled to see him last October and he confirmed my suspicion of MCAS. He was running about an hour and a half behind when I saw him, but he still spent well over an hour with me. I should have been better prepared with questions to ask at the end. He was pressed to get to his next patients. He ordered a slew of labs on me, which I had done the next day. I knew he wanted a 24 hour urine so I started collecting it he morning of my appointment so I didn't have to stay even longer.

It's a much different appointment than I was used to and I finally felt like I wasn't completely off my rocker. He takes a blank piece of paper and starts going through a long list of symptoms/questions from his head (he is highly intelligent and very confident). I can't believe how many things he went through from his memory. He typed up a detailed 3 page report on me for my local doctors.

Depending on how far away you live, he will probably require a local physician to work through. I live 12 hours from him, so finding a local doctor was a challenge. I totally understand why I need a local doctor, but it makes treatment more challenging. I have to contact my local doctor (who had never heard of MCAS before me, but is intrigued by it), she has to decide whether to contact Dr. Afrin or make a decision herself, then she has to get back with me. I wish I lived closer to Dr. Afrin so he could be in direct control of my care. But he is very gracious to give up time to speak with so many doctors while getting nothing in return. Be aware of this process if you decide to go and have a local doctor willing to work with Dr. Afrin.

Currently I am in the midst of a bad flare, as they haven't found the right combination of meds for me yet. Dr. Afrin warns finding the right treatment plan can take a long time. But once it's found, most patients resume a somewhat normal life.

Dr. Afrin is very passionate about this disease. He isn't a beat around the bush type of doctor. He gets to the point and says it like it is. He feels very strongly about his research and the havoc mast cells create in the body.

I know Julie (Mack's Mom) was diagnosed by Dr. Castells.

I hope this was helpful. Best of luck!

Kate

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Volley9,

People on the MASTOCYTOSIS forum suggested I contact Dr. Lawrence Afrin to see if he would consier me a possibility for MCAD. The moderator on the forum, Lisa, was supposed to give me his email address. If you have Dr. Afrin's email, can you PM me with it please? Thank you.

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  • 1 month later...

Thanks for your responses. My referral is being sent this week, so am now just waiting for an appointment time and date. I have 2 physicians, a NP, and pharmacist waiting for instruction how to treat me. Please keep us posted on your upcoming appointments. Any idea how long you will be there?

Thanks, Lyn

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