HELP...Mastocytosis Question...PLEASE READ

Discussion in 'Fibromyalgia Main Forum' started by jenni4736, May 15, 2006.

  1. jenni4736

    jenni4736 New Member

    Anyone who has read a recent post from me is aware that I have had problems with allergies lately. Someone posted that it might be Mastocytosis.

    I origionally dismissed this theory because the article I origionally read said that the skin patches were red/ brown in color and mine are a definate pink/red.

    I have FM and CFS but the recent allergy problems are fairly new for me. I have had hives for about four months now. I have had chronic diarrhea for a few years now but after many tests, no problems were found.

    Over the last 7 months, I have had severe pain in the upper stomache that comes randomly. I had a CAT Scan done but nothing showed up. The pain subsided and this issue was tabled after a while.

    10 Days ago I had my skin allergy testing done. I went into anaphalatic(sp) shock. Because I got hives again (the first symptom of a problem) I received oral steroids as treatment. The hives disapperared during the steroid treatment but returned a few days after completion. The stomache pain has now returned as well.

    Anyone with this diagnosis or knowledge PLEASE RESPOND. My question is this. Do these symptoms sound typical?? What diagnostic tests and treatments are used?????

    Thank you in advance.
  2. jenni4736

    jenni4736 New Member

    bump for help
  3. intensemom

    intensemom New Member

    It sounds like Addison's Disease or low cortisol. You need to have your cortisol level checked!!! It's probably low.

    I have had terrible allergies and asthma for 2 years and the reddish brown spots on skin; but it is better now that I am taking bioidentical cortisol. I go to the FFC in Detroit.

    You should google Addison's Disease symptoms or low cortisol to see what you think!

    Let us know what you find out!!!

  4. intensemom

    intensemom New Member

    ONe more thought...have they taken a biopsy of your skin lesions? That might be a good thing to do. My husband has psoriasis and that's how it was diagnosed; a biopsy.

  5. jenni4736

    jenni4736 New Member

    Thank you for the info. I will look up Addison's disease and have my cortisol levels checked.

    I have an appointement w/ internist Friday. I was just trying to get an idea of the cause of upper ab. pain and the hives.

    I know we are not doctors. I get that. But I trust you guys and I know that we all have the ability to help each other faster than most doctors can get lab results back from the labs.

    If any one else has any ideas or leads it would be appreciated.

  6. dolfenn43

    dolfenn43 New Member

    I work for a dermatologist. The way we have diagonosised this is is with a biopsy. My advice is to make an appt. with a Derm. and have a simple biopsy. Should take about a week to get your answer. Hopefully with good news :)
    [This Message was Edited on 05/15/2006]

    CANSADO Member

    Hi Jenni,

    As Dolfenn suggested, have a biopsy done by a dermatologist. You should speak with the Drs. office to see if the Dr. is familiar with mastocytosis before you make an appointment with him/her. Masto does not always involve the skin, but when it does, the marks are similar to freckles, but when you rub them with something like a fingernail, the mast cells degranulate (release histamine) causing them to become raised. They settle down after a while. If the biopsy of one of the spots shows a large collection of mast cells, that might indicate mastocytosis. At that point, you should then find an allergist or dermatologist who specializes in masto (not many around) who would then do more testing. As I mentioned in an earlier post, this is rare and your problems could be something else. A good masto website is tmsforacure. This is a "dot org" site.
  8. jenni4736

    jenni4736 New Member

    Thank you to all...

    Just really confused about all of these new symptoms I am having. This last flair has sent me ino a tail spin. I'm just trying to find some answers to the confusion. I'm sure the new internist will figure it out....I hope!

    Love to All,