Cutaneous mastocytosis

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Jazzermom2
New Member


Date Joined May 2016
Total Posts : 1
   Posted 6/24/2016 9:51 AM (GMT -7)   
Urticaria pigmentosa with diagnosis of asymptomatic cutaneous mastocytosis. Thankfully no itch, no triggers other than alcohol. Just the proliferation of flat reddish brown spots on the skin. Anyone else out there with this?
Does anything reduce spotting?

iWantToLive
Regular Member


Date Joined Jun 2013
Total Posts : 21
   Posted 7/21/2016 7:15 PM (GMT -7)   
Jazzermom!!! I am diagnosed with non-clonal mast cell activation disease which is in the same class of medical disorder as mastocytosis except we unfortunate individuals with nonclonal react more than masto and are systemic. When were you diagnosed and who finally found it? If you dont mind me asking? I was diagnosed 3 years ago but have been dealing with it for over 20 years. Do you get any of the other symptoms..i.e. Swelling...hives....heart...fatigue....etc....i had to go on disability as my reactions are severe and my triggers are medication (all)...stress...exercise...heat...sun...some foods.. What are your triggers??? Sorry for all of the questions but i am so glad to find someone with the same thing....i mean...our illness is sooo rare that a lot of drs dont even know how to treat us! Im so sorry you have but so glad ive found you!!!
Nonclonal Mast Cell Activation Syndrome, CYP Genome Defficiency, Kounis Syndrome

JOIN ME IN RAISING AWARENESS OF MAST CELL DISEASE!!!

iWantToLive
Regular Member


Date Joined Jun 2013
Total Posts : 21
   Posted 7/21/2016 7:19 PM (GMT -7)   
Oh man....i just saw the date of your post.....please...please come back..
Nonclonal Mast Cell Activation Syndrome, CYP Genome Defficiency, Kounis Syndrome

JOIN ME IN RAISING AWARENESS OF MAST CELL DISEASE!!!

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9657
   Posted 7/27/2016 6:39 AM (GMT -7)   
iWantToLive, don't give up yet, there may be others around on here with your illness...Sorry for what your going through, it's really hard when it takes so long for a diagnosis and with so many doctors that are clueless...Medical schools need to improve, so that these diseases like yours can be found and diagnosed earlier...
I have a common disease RA and had the feet swelling years ago, but it took over 20 years to finally get the dx, it is frustrating, doctors need more compassion and to stop saying it's all in your head!
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* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
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