Hi everyone. I just need to to vent and I suppose this is the best place for that. I went down to Sacramento today, 2 hours from where I live, so not too far, but I'm a little discouraged. I had a long history of symptoms that I wanted to go over with the doctor. I called last week to make sure first time visits were given adequate time for discussion. They told me I would have 40 mins. with the doctor. So not to waste anytime trying to remember all my points, I wrote everything down. Well, it was like any other doctor appointment. I went in, waited 20 mins. for the doctor to come in and she wouldn't read what I had written and barely listened to any of my symptoms. She looked at my labs that confirm positive autoimmune urticaria, but because I didn't have hives all over my body or angioedema, she wondered what I was there for. I told her that I suspected MCAS, and that I have developed a severe sensitivity to frangrances and chemicals. She said that the medical world does not accept those symptoms as symptoms of anything, and that she had nothing to say on this matter. I'm just so sad. Another doctor who won't listen to me. I feel hopeless. On the flip side, she did do a tryptase lab and a c kit (which needs to be sent back the the Mayo clinic, so results will take about 10 days). But she said that even if I were masto or MCAS, the medications would be the same. She told me I could take 20mg Zyrtec twice a day and to see how that goes. I asked her about mast cell stabilizers and she said I needed to try high dose antihistamines first (which I kinda already am!) so I guess the appointment was good and bad. I just wish someone would aknowledge my symptoms as they are debilitating and ruining my life! Will a c kit test either confirm or rule out MCAS or mastocytosis?? I just feel like curling up in a ball, I dot know what more I can do. I wonder if Dr. Casells or Dr. Afrin would see me? I'm just worried about the cost. That would definitely not be covered by insurance. Can anyone tell me what an out of pocket visit to one of these doctors would be? Do you think they would even see me??

Thank you. It means a lot to me. I will keep pushing forward. There has to be some sort of light at the end if this dark road, right?? I was not aware that you could get long distance correspondence! How would I go about doing that?? Would somebody suggest treatment for MCS without a formal diagnosis, or is autoimmune urticaria considered a MCS? I have no idea! All I know is that I can relate to many of you, and that my sensitivities are constantly triggering me making me feel very sick! I can't stand it anymore. I need someone to listen  . Maybe the tryptase test and c kit test will show something. If not, then what??? I'm sorry, I'm having a pity party for myself here. I know we are all suffering and looking for answers. I guess I'll try taking the 2 Zyrtec twice tomorrow and see how I do. Has anybody had the relief of these symptoms ever going away???

Haha! Nope, don't want you as a patient!!!! Lol that's the feeling I keep getting! It was funny, when she told me that "they" don't recognize triggers as symptoms, I told her that they better start! I was pissed! Grrrrr......I have decided I need to go to a specialist. If I were to call, let's say, Dr. Afrin, would there be any way to have a phone consult with him? I'm just wondering how to get the ball rolling! I'm going to try her idea of super dose antihistamines today (or maybe tomorrow, I've come down with a nasty cold) and see how that goes. I'm hoping something will come about with the tryptase or the c kit. Kind of ironic to want a disease to come up isn't it! But in this awful world of medical care, it's the only way to get anyone to pay attention to you! Apparently being diagnosed autoimmune urticaria just isn't enough, lol! Pam, have you seen any of the top specialists that people talk about on this site? Do you have to have positive MCAS or masto to get an appointment. Do you know whether or not they consider AU a mast cell disease?? Thanks for your response! I'd love to take that doctor down the laundry detergent aisle at te grocery store with me, then see what she says! I had one doctor tell me that the laundry detergent smell probably brought up a bad childhood memory which made me have a panic attack! I couldn't believe it!!!!! Unbelievable!!!!

OMG the laundry detergent Isle is the worst and it doesn't have anything to do with childhood!! I have not been to one of the specialist.  I live in Indiana, and luckily I have found a great allergist/immunologist.  He is an older guy reminds me of Papa smurf! He has had other Masto patients so I think experience was helping me. He knows some of the specialist and goes to meetings a talks with them periodically.  Like I said it took a year for him to start me on mast cell stablizers.  My tryptase is slightly elevated. I was having anaphilaxis every day.  I was really to the point I didn't care what it's called I will try the meds.  I responded positively.  He thinks I have masto.  However I have not had a bone marrow biopsy.  There are a lot of false negitives. He was concerned that if it came back negitive that my insurance would not pay for the cromolyn.  It is very expensive $1200 a month.  I now purchase it through a compounding pharmacy at $115.00 a month because of an insurance change.  I don't know officially what it is, however I think he is right.  I don't care what it is called I'm just happy the meds have been working for me.  I take precautions like a masto patient.  The treatment is the same as MCAS.
So I don't know the answers to your questions I think you can call and ask those questions to the receptionist.  
I am glad you told her that they should consider those symptoms!  I thought of a few things to say to the doc after I left when he rejected me..guess brain fog kept me from getting into trouble!  In hindsight it really is good he didn't take me as a patient, because the other guy knew what he was doing, he was just being extremely thorough.
If I had not found my doc I would have went to a specialist, because I was so sick. It is so rare and docs just don't know about it.  What kind of doc was she????
Pam