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Problem getting into Dr. Castells help (Read 11513 times)
CrystalG
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Problem getting into Dr. Castells help
08/20/12 at 07:11:24
 
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.
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PJP123
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Re: Problem getting into Dr. Castells help
Reply #1 - 08/20/12 at 13:29:31
 
Are you diagnosed with autoimmune chronic urticaria?  If yes,  pick up the phone and call Dr. Castells office yourself and say you would like Dr. Castells to look over your medical files.  They want your doctor here to be the go between but I called 1st and I got a patient ID # right then and there just because of Autoimmune chronic urticaria.  

Pam
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CrystalG
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Re: Problem getting into Dr. Castells help
Reply #2 - 08/21/12 at 03:11:05
 
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!!!
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PJP123
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Re: Problem getting into Dr. Castells help
Reply #3 - 08/21/12 at 03:34:02
 
I'm so glad I could help!  I called back in Jan/Feb? but then my husband lost his job so have not gotten to Dr. Castells yet.  

The problem is my immunologist isn't helpful.  Wouldn't even read all the scientific research I printed from here so then I went to head of hematology at local hospital.  He ran a few more blood tests (of which chromagranin A was slightly elevated, and 3 other things slightly off), but he said all was normal.  Normal for who?  I'm sick and these numbers being slightly off just may be enough to make me sick.  This doc said he would write a letter with my results to Dr. Castells but never did.  That was March.  I'm so sick of trying.
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CrystalG
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Re: Problem getting into Dr. Castells help
Reply #4 - 08/22/12 at 00:49:09
 
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. Smiley
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goldielove
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Re: Problem getting into Dr. Castells help
Reply #5 - 08/22/12 at 14:46:01
 
I never even had a bone marrow test done and have seen dr castells now three times without any issues and she never felt I needed a bone marrow biopsy so I am sure you can get in by just having Nast cell activation
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Britt
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Re: Problem getting into Dr. Castells help
Reply #6 - 08/22/12 at 14:52:57
 
How do you show mast cell activation?? I'm sorry, I'm just really confused!  Huh 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!
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PJP123
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Re: Problem getting into Dr. Castells help
Reply #7 - 08/22/12 at 16:13:46
 
At this point in time if you are diagnosed with autoimmune chronic urticaria that is the name of the mast cell disorder you have.  Last winter the criteria for mast cell disorders came out.  I got the link from either Lisa or Deb.
Autoimmune chronic urticaria is way bigger than itchy skin.  I don't think they really have a handle on it yet but we respond to the same meds as masto patients.

My ANA was 1 :1260 homogeneous with unusual spindle pattern.  One other person on the forum said their son's test said the same thing.  My immunologist, rheumotologist, gastrointerologist, neurologist do not know what this means.

Do you know your ANA level and pattern?
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Britt
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Re: Problem getting into Dr. Castells help
Reply #8 - 08/22/12 at 17:57:03
 
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!
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Britt
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Re: Problem getting into Dr. Castells help
Reply #9 - 08/22/12 at 18:21:18
 
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!
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PJP123
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Re: Problem getting into Dr. Castells help
Reply #10 - 08/23/12 at 03:07:07
 
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,  

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Britt
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Re: Problem getting into Dr. Castells help
Reply #11 - 08/24/12 at 06:26:07
 
Good read! I was hoping that it would talk about our sensitivities to fragrances, chemicals etc. so I could show my doctors here who don't believe me, but I didn't see anything mentioned in the article. Does anyone know of a good article that talks about these issues as symptoms?? I would greatly appreciate it!
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Maiysa
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Re: Problem getting into Dr. Castells help
Reply #12 - 09/15/12 at 14:32:07
 
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! Grin
Maiysa
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Joan
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Re: Problem getting into Dr. Castells help
Reply #13 - 09/15/12 at 17:13:47
 
Maiysa,

  Good for you to have been so persistent!  That's so hard to do when we're not feeling well.  Records being lost and never getting to doctors is far more common than we'd like to believe.  Also, good for you to trust your instincts and research knowledge and push for what you know to be true.
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CrystalG
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Re: Problem getting into Dr. Castells help
Reply #14 - 09/16/12 at 03:33:38
 
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.
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