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Copy Of Email From Afrin, Have Question


Darlene
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heres the email

Your symptoms are quite consistent with a mast cell activation disorder (MCAD), far more likely the prevalent mast cell activation syndrome (MCAS) than the rare systemic mastocytosis (SM).

MCAS often afflicts multiple members within a family, though often with different symptoms in different members of the family. This is due to the different members having different mutations in the regulatory elements of their mast cells. It is not presently understood why the mast cell mutations in different members of an affected family are different and acquired post-conception rather than similar and inherited from one generation to the next.

It is common for MCAS patients to be diagnosed with "POTS," but there is no way POTS can possibly account for any but a small minority of the full spectrum of symptoms most POTS patients report. Although much research remains to be done in this area, I suspect most patients with "POTS" actually have MCAS as their root problem. Unsurprisingly, treatment targeting the POTS rarely helps the other symptoms which are caused by a problem more fundamental than POTS.

I'm happy to see you (the process begins with your contacting our schedulers at 843-792-9300), but let me provide you fair warning on two counts: (1) My schedule is getting increasingly backlogged, and the wait at this point for a new-patient appointment slot may be a few months. (2) For many obvious reasons, it is impossible for me to serve as the primary manager of the acute difficulties suffered by my distantly located patients. Therefore, it is *essential* that you identify a local "physician/partner" who is willing to be your primary manager -- and that physician should know that I am happy to provide prompt consultative input to any physician who reaches out to me for help. Thank you for your understanding on both of these important points.

Whatever you decide to do, I wish you the best of luck...

-- LBA

he says in the last paragraph "For many obvious reasons, it is impossible for me to serve as the primary manager of the acute difficulties suffered by my distantly located patients. Therefore, it is *essential* that you identify a local "physician/partner" who is willing to be your primary manager -- and that physician should know that I am happy to provide prompt consultative input to any physician who reaches out to me for help." What does that mean?

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He is looking for a doctor that he could provide suggestions to for treating you, who would be local and easy for you to see regularly, and who would be willing to collaborate with him for your treatment. Often specialists will do this because the treatments they prescribe have side effects, so you'd need a local doctor to help manage you with the day-to-day details.

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That is what he told us at our visit with him, to find a local doctor that is willing to work with him for treatments. We have a follow up with him in mid May, but then we need to find a local doctor who can consult with Dr Afrin. It isn't really practical for us to keep going to South Carolina since it is a two day drive. But at least he is very willing to work through other doctors for treatment.

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darlene,

I have an appointment with Dr Afrin mid May and have chosen to see him to firm up my MCAS diagnosis (2 docs already diagnosed me based off my symptoms and skin biopsy showing plasma cells, but haven't yet found lab proof of the mediators that mast cells release during anaphylaxis), get this disorder in my records and officially have him lay out my best treatment options. I have been able to sort out many of my annoying symptoms with anithistamines and a low histamine/salicylate diet, but still get the anaphylaxis.

In the past, Dr Afrin has been kind enough to direct local and ED staff in emergent and troubling situations, but it is obvious that as he helps more patients, word of mouth of his care and skill at diagnosing mast cell disorders is spreading like wildfire, and he is booking up fast. Same thing apparently happended in Boston at Brigham and Womens Hospital, prompting a long backlog and a evolving process to get in.

Since mast cell disorders often provoke anaphylaxis (severe plummeting of BP or angioedema/broncho/respiratory type and other forms) and a host of symptoms in between which can be triggered to escalate and can manifest as life threatening, it is imperative that a local physician manage the epi pens/steroids/antihistamine/gastrocrom, etc. Dr Afrin will order tests and diagnose a mast cell disorder, recommend a treatment plan based off your specific testing and symptoms, and direct those that request help in sorting out specific issues when back home, but he doesn't order meds and relies on a local doc to follow his recommendations and monitor the treatment. He is very willing to help any local doc better understand mast cell disorders and is asking you to find a local physician partner to manage your day to day care. He is an hematolgist/oncolgist and is quite familiar with guiding cancer treatments from afar.

Keep us posted. Good health to you,

Lyn

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