First want too start out by saying I live in Southeast fl and was searching for a long time till I found out what I have, I am still not 100 percent certain this is what I have. I was told I have MSAD, as my tryptase is high normal, all labs are normal so far waiting for my 24 hr urine . I started about a year ago with flushing horrible tremors in my head, burning in my back which now has progressed to my back. A lot of neurological symptoms brain fog and things like irrational thoughts during these episodes. I was bedbound in the beginning could only get up too use the bathroom. I went all over the country including NIH they though I had a pheochromocytoma, said no but did not tell me what I had. I ended up at Ohio State for one month living in a hotel room where they finally said depression and pots, this is after many tests. I kept telling them I get real sick during the flushing episodes and feel horrible I urinate like every five minutes during these episodes. Anyway finally a month ago a friend of mine told me too go get a skin bx as hers came back positive and she convinced me too go and what a shock when it came back highly positive for mast cells. I went too Dr. Afrin in South Carolina and he said he is 100 percent sure I have this by the way I loved him thought he was great, he spent a lot of time with me, but did tell me I need a Dr closer too home so that is what I am searching for now. HE wanted me too start on Claritin 10mg twice a day and Pepcid 40mg twice a day I had a horrible reaction had syncope high BP my BP never goes low it only goes high and my biggest problem is tachycardia my heart rate as soon as I stand goes up to 150s even on atenlol. IF I try and not take my atenlol as I read it is bad for mast cells I can't function. I stopped all meds per Dr Afrin and just took benadry 12.5mg at night the next day I could not function it seemed liked the benadry made me very sick and I had a horrible mast cell activation I was bright red and burning up and could not function, I was thinking this was b/c the benadryl wore off and I had no other meds in my system. I do take a clonodine patch .1mg which has worked well for my BP except during the very bad mast cell attcks. Anyway now I am off all my meds except atenlol. Clonodine patch and my ativan and lunesta I take too sleep if my headache gets very bad I take tramadol I am at my wits end with this as, I used to be so active and I still try to walk and do my bike daily but its getting harder esp with this heat in Fla my question is I see on here the best dr's too go too are in Boston my daughter lives there so that will not be a problem but traveling and just the thought of it makes me sick right now does this sound like possible mast Cell activation disorder, I never get shocky or low BP or any rashes just heat and flushing and the other symptoms, I do notice sometimes I get numbness especially when I wake from a deep sleep in my arms. Ok so sorry for this long post I am so happy to have found this forum

thankyou for your reply, I did like Dr Afrin very much but I did get sick when I started the claritin and pepcid, he said he wanted too start me on the easiest meds at first as we could always progress up too the prescription meds. I could go too Boston but wanted too try and see if I could do it with a local MD here, but as you say most do not about this disease b/c if they did I would have been dx a long time ago. I am also an RN and did my research and even mentioned this too many MD's in my quest too find out what was wrong with me, I even told them I get dermagraphia and my labs were normal except for my Sed Rate was 73 sky high and my c reactive protein was very high as well. It annoys me that I did not get the right answers at least Dr. Afrin told me what he thought I had and helped me understand it. It was the first time a dx made sense too me as I had before told other Drs that I thought I had this but b/c my tryptase was normal they all poo pooed the idea. What gets me very upset is I even went too Vanderbilt and they said all my autonomic testing came back normal but could not give me an explination for what I had , and they wrote articles on MSAD and POTs UGHHHH. I just need to know what meds too start on as like I said above the claritin made me very ill and so did the pepcid of course i started them together and did not start them one at a time. How hard is it too get into Boston too see Dr. Akin and how do I get in touch with them. My daughter went tooo college there and now is in law school and she lives five minutes from downtown boston. Here is some interesting things I thought I should mention both my children as kids had hives my daughter in particular had such bad reactions too all antibiotics that when she had too take antibiotics for things like a simple ear infection she ended up in the hospital and tooo this day she can't take any antibiotics except cipro othewise she gets a lupus type reaction with swelling and hives and weakness and her throat closes. Now my son always got hives for another reason he never had a problem with antibiotics, but he would get unexplained hives. At 17 he had his first very bad reaction too antibiotics and ended up in the hospital and had too be put on massive doses of prednisone until they could control his reactions. He was very sick and was unable to walk they could not figure out what was wrong with him and he kept having outbreaks of bad hives and swelling of his feet and mouth and eyes, finally I found a Dr at Celevland Clinic Weston who did a cu index test at that time it was for mast cell disease and his was sky high, he was on meds for one year and is not a healthy 21 year old. My other question is should I get my kids tested b/f they have problems recently my son had a problem and it showed an enlarged spleen but he is not having any problems at all , I know as a mother I worry more about my kids then myself even though I am the one with the problems now. Ok thanks so much