I hope you all agree that this is the best place to post my experience with seeing Dr Afrin. If NOT, (Deborah) please feel free to move where appropriate.

I appologize for my delay. As most know, long drives (it was 10 hours of driving for me) take a toll on us. Plus many other "LIFE" issues to deal with.

SO, let me first say that I am SOOO glad that I was able to see Dr Afrin. Although he was running behind in seeing patients, he still managed to spend an hour visiting with me. Remarkable! He did most of the talking but he is not one to speak just to hear his own voice. He had good stuff to share with me. One gains true insight into his dedication and knowledge of Mast Cell Diseases and the people that are suffering from it.

This is how it went......Once he came into the room, he noticed immediately the molting on my legs (no other doctor has seen that on their own without me pointing it out). He did a physical type examination. He did a skin scratch test on my back. Before he was even done scratching I was already reacting. He either was impressed by that or just felt the need to comment on it to let me know. He went over my records and asked me questions pertaining to what he was reading. Most doctors ask YOU to tell them of your symptoms but he went through a series of questions asking me if I exhibited any of the symptoms he was asking me about. Seems the symptoms he asked of were Mast Cell related symptoms. He went through an explanation of Mast Cells and how they misbehave. Then he showed me on his computer the hundreds and hundreds of different mediators that can be released by Mast Cells explaining that this is why it can be so difficult to not only diagnose but to treat. He prepared me by telling me that once the bad mast cells are found that it could take months or longer to find the proper treatment for me. He had me complete a 24 hour urine collection and when I turned it into the lab I had blood drawn to have many tests done. He said results could take as long as six weeks to get back. He stressed that the most important thing for me to do upon returning home was to find an oncologist/hemotologist that is willings to LEARN about Mast Cell Disorders and also willing to work with him, Dr Afrin, in treating me. So this is what I am working on now. (Perhaps those of you not yet diagnosed and are not able to travel to see any of the Mast Cell Specialists could find a local oncologist/hemotologist who would be willing to contact one of the specialists to find out what they can do to test you and help you reach a diagnosis).

So far my experience with Dr Afrin has been nothing but positive. I have felt his dedication to learning more and more about Mast Cells and, MOST IMPORTANT TO US SUFFERING, his dedication to his patience is a refreshing and positive experience. I would HIGHLY RECOMMEND this doctor to anyone interested in reaching out to him.

Now, what I'm about to say next is SOLELY my personal thoughts and by no means do I mean to implicate that Dr Afrin said ANY of the following to me:
In my search for answers, as in many of your cases as well, I often wished that other doctors were more versed on this Mast Cell issue and that I didn't have to go through such a long and disappointing search. During this trying time I often thought, "I so wish I could see a specialist on this and get diagnosed and treated". However I realize there is a pattern amongst all, yet few in numbers that they are, the Mast Cell specialists.......long wait times to get appointments. I do not know what other specialist's outside of Afrin recommend but I commend Dr Afrin's approach in insisting that we find local doctors WILLING to learn more about this and his willingness to work with them to help them learn, diagnose and treat patience suffering from these disorders. I see his approach as his being concerned for patience and wanting to help us yet also trying to get out to the medical community the knowledge and exsistance of Mast Cell issues. His willingness to take the time to TEACH and SHARE this information only reaffirms to me his dedication and goodness about him. Also, now that I will be interviewing and looking for a local oncologist/hemotologist willing to participate, learn and treat patience for Mast Cell issues, I see myself as being a part of this reaching out and HELPING others who may be suffering and not knowing what to do or how to get help. So although I WANT TO BE TREATED by the one's who really know what is going on and I don't want to be the guinea pig patient that some doctor is going to learn as we go type situation, I am MORE then willing to do so if it means it is a way to get the word out about Mast Cell diseases. I'm sure Dr Afrin will more then do his part in communicating to these new doctors so we patience can get the best care we can.

So there you have it. Those are my thoughts and my experience with Dr Afrin.
Should you contact Dr Afrin?
RECOMMEND, RECOMMEND, RECOMMEND! Good luck to you.

Kim

Hi Kim,

  So glad you had a good experience.  I hope your testing is enlightening and helps you become stable.

  I found that some hematologists/oncologists don't want to see mast cell patients unless we've already been diagnosed with SM.  Also, I haven't yet found anyone nearby who is knowledgeable or willing to learn.  So I travel.  Hope you can find one locally who's willing to learn.

Thanks for sharing your experience Kim.

I completely agree with you about those who take the time to share their knowledge with others.  My initial forey into masto was started when my Orthopedic doc told me my bones look weird and sent me to a  bone specialist.  

I was back at my otherped yesterday and felt like he brought me into his class for show and tell.  Not in a bad way, it was all in good fun as he paraded all of the other docs in the office look at my xrays and try to guess my mysterious disease that they had never heard of.  They were all very curious.  

I don't think my case is the norm (if there really is one) with my extremely dense bones, but they will all be seeking out at least some basic information about the disease. and I think that's awesome.

That reassuring to hear your positive experience with Dr. Afrin. I have an appointment with him on Nov 14. I hope he can help me out.

Rick

  I've had to fly with some strange things, but flying with a bottle of urine may pose some problems for an airline as well as Homeland Security!  Be sure to check ahead about how to get through security and onto the plane with it.  I don't know whether ice is generally allowed either, so would be good to check that.

  Can a lab ship it on ice for you or can you wait until you get home to do the tests?

Hi! I have been seeing Dr. Afrin for 2 years now (once a month) and hospitalized twice there at MUSC in Charleston. I travel 4 hours from Charlotte, NC. We have stayed just about everywhere and I have to agree with Kimtg68, Holiday Inn Express is the nicest for the price. You can get reduced/special pricing by contacting MUSC guest services and having them reserve your stay. You will need to follow up with the hotel for any special arrangements but it saves quite a bit.

Hugs, Elisha