Funny, I was just looking into this and here is this community! I've been a member of MedHelp since Sept 08.
My docs and I have been trying to figure out what is wrong with me. It's been going on for 7 years!
Not one has looked at my skin, even though I get terribly itchy and get "rashes" Here is a link to some pics of my skin dicolorations & rashes. Does this look anything like mastocytosis?
I have small fiber neuropathy, being caused by something unknown, as well as fatigue, reflux, get flu like symptoms on and off... long list of stuff. I developed an "allergic asthma" about 8 years ago, am super sensitive to perfumed soaps and lotions, have constant seasonl allergies.
Hello Dnmh! Sorry I took long in replying...I haven't been checking up on Medhelp lately! Anyways, I would say no, those pics do not look like mastocytosis. Mastocytosis that shows on the skin is called Urticaria Pigmentosa. There are reddish brown spots that are on the body and when they are rubbed they become inflamed and kinda look like hives. You can just google Urticaria Pigmentosa for pics. That will probably help you. Generally Urticaria starts up from birth to 2 years of age or so. I hope this helps!
Yes Mastocytosis show on the skin and is called UP BUT when it shows on skin AND in bone marrow is called Systemic Mastocytosis...I know this because my husband was diagnosed with it a few years ago after skin biopsy by dermatologist who then suggested a hemotologist who confirmed it with a bone marrow biopsy. It is extremely rare...they took pics of him an used his case at a convention...he has been fine with occasional flare ups so far. I hope this sheds some light for you!
Systemic Mastocytosis is when it is internal, it doesn't have to have skin involvement which makes it harder to diagnose and many patients with just system will go years before it is confirmed. At least with UP there are more visual clues.
Also there are a couple of other forms of Mastocytosis besides UP and systemic. Look for The Mastocytosis Society they are a good reference and used to have pictures of the various types.
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