My immunologist told me that I couldn't be referred to Dr. Castells unless I had a positive bmb for mastocytosis. After talking to everyone on here I convinced my PCP that I didn't need a pos bmb so she was going to refer me. My PCP just called me and said she tried to refer me to Dr. Castells and they sent back a whole list of requirements to get in to see her including a positive bmb test... Now how do I get in to see her?? I didn't think I needed a pos bmb. Any suggestions?  My PCP was my only hope for a referral and they've got her convinced I need a pos bmb to get in.

Its been called so many things, now my Immunologist is saying Autoimmune mast cell disease or Severe form of Autoimmune Chronic Urticaria and Angioedema. Thank you for the advice. I just called Dr. Castells office and she asked that my Doctor send over all the records that are on that sheet and that it was okay that my bmb was normal. I kept thinking I have to go through my doctor, I guess that I still do, but it sounds like they are not so concerned with bmb being normal. They also gave me a medical record number. Thank you very much Pam!!!

Im sorry to hear about your husband losing his job. I totally hear you about doctors not being helpful. Their ego's are too big and they are too set in their ways to go outside their comfort zone. It sounds like you really need to get into Dr. Castells. Can your PCP be of any support? My specialists are so not helpful, but my PCP has been fighting right beside me and believes in me, this has helped me continue fighting as if I stuck with these egotistical specialists, I wouldn't be anywhere but hospitalized today. Everytime I meet with another specialist she refers me to, I go back and tell her it was a waste of time, so then she tries to find another one for me. I finally told her no more, I just want Dr. Castells and Dr. Greenberger. So even though I ran into a speedbump, she is now going to continue to try to get me in there. I find that if a doctor says he is going to do something, it doesnt get done unless you continually harrass them. I called one specialist every day for two weeks until they finally sent a letter to my PCP that they said they were going to send. These doctors get to go home and not suffer, they have no clue what we go through on an hourly basis. Call that immunologist as much as you can and remind him of the letter that he was supposed to send. Hang in there!! We are all in this together.

How do you show mast cell activation?? I'm sorry, I'm just really confused!   The only thing I have a definite diagnosis of is autoimmune urticaria, but I just know because of my symptoms that I have mastocytosis. I would be so surprised if I didn't!

I didn't know that! I would like to see the testily of criteria for mast cell disease. If anyone knows where I can find that, I would greatly appreciate it! And yes, from personal experience, autoimmune urticaria is much more than itchy skin and swelling! Knock on wood, I haven't had hive in a few years, and minimal swelling over the past couple years. But what I do have are GI problems, joint pain and chemical sensitivity which is proving to be much more intrusive than itchy skin! So are all the same medications used for masto options for people with urticaria? Sorry, I've been blabbering since I rejoined!!! I've been in the dark here! I want to suck up all y'alls knowledge! I need to educate myself so I can move forward!

http://www.jacionline.org/article/S0091-6749(10)01333-3/fulltext

This is good to read.  I tried giving it to my immunologist and she pushed it away.  She said she knows about it.  Yeah, if she knows about it why didn't she say that this is possibly what I have,  

I just wanted to tell Crystal that I had a working diagnosis of MCAS by a doctor and he sent my stuff to Dr. Castells.  I have had three typtase tests on normal days show up at 11 and an elevated prostaglandin F2 24 hour urine test, elevated white blood count, elevated compliment panels showing a lot of inflammation but no autoimmune disease and am extremely ill.  I had to fill out the paper work for Dr. Castells and send the rest of the tests in.  I was shocked when her office called and told me that they didn't think I had mast cell activation.  I was so confused, especially after being so ill and finally getting a diagnosis and then the meds helping me, I was now at a lost.  So I called Brighams office and asked to speak to the doctor myself and told the nurse that I think she missed something.  Anyhow, when Dr. Castells called she said she didn't believe I have mast cell after seeing a few of my photos of the rash's. But after having about a 15 minute conversation with her, she said, only 5,000 people have mast cell activation and that she does think I have it and that she wanted to see me as soon as I could get in.  She said she never got my elevated prostaglandin, but I know I put it in the envelope on the very top of all the tests I sent.  I checked it twice.  It must have been lost somewhere from the office to her desk or else looked over.  So, I'm saying, keep trying to get in.  The nurse was so helpful and I explained my situation to her and she is the one who did her best to help me get in.  She's very sweet.  I'm so sorry I can't remember her name.  I also am not sure they even got my doctor referral.  So things can happen, stay on top of it. Dr. Castells also told me that I do not need a bone marrow biopsy.
She was actually very wonderful once we got the miscommunication out of the way.  Hang in there!
Maiysa

Thank you Maiysa, I am so glad you were able to speak with her and tell her your story! My levels are all normal, except elevated WBC count so I am worried Dr. Castells will think I dont have it. Even if she thinks I dont have it, maybe she can still see me to help me figure out better treatment for the auto antibodies eating my mast cells so they constantly degranulate. I have all the symptoms of a mast cell disease and can not continue this suffering, I want my life back.