I strongly suspect I have a type of Mast Cell Disorder (see under my question for why Im thinking that).
Ive had some strange incidences with freckles. What Im trying to find out if masto freckles can suddenly disappear in some kind of mastocytosis or mast cell disorder.
When I over do things eg over exert myself and "crash" (so I have been given a CFS diagnoses) and get then a sore throat, I tend to get 1-3 brown freckles (or sometimes its just small red patches) inside my mouth. The last one was on the fleshy inner check area and the 2 times before it was on the roof of my mouth. It tends to be in different places. Its gone more like a sore on one occassion but often will just look like an ordinary brown freckle. The weird thing about these is they can disappear over night.. they disappear when my sore throat is better.
Ive looked online everywhere and cant seem to find anything about health crazes with freckles appearing but then disappear when health gets okay again. Is there anyone here who has masto who has freckles which can disappear over night?
Why Im thinking I have a mast cell issue
- I've had hives several times (cause unknown)
- issues with that skin writing thing for a couple of years thou it isnt happening now (where you welt when you run a fingernail over it), I used to also go very red rashed after a shower.
-I once had what appeared to be a darier sign (a small rash which blistered when touched, a doctor said I must of got it sun burnt but I never went out in the sun!! I so wish that had been biopsied).
- my BP is highly unstable.. its going super high (spiking up to near 200) but also can suddenly ditch (even down to 0 and I collapse).
- Ive got a hyperadrenergic POTS diagosis and Ive read that most people who have that and have the BP issue have mast cell disorder. Im ending up having to be ambulanced to hospital frequently where they give me a saline IV (that does help)
- late last year I had a severe food reaction where my mouth all swelled to pizza so now I have an epi-pen
- I have multiple chemical sensitivity and can collapse with perfumes
- I have a host of other troubling health issues eg fatigue etc. Ive severely disabled
- I have an uncle who has systemic mastocytosis (who does have the KIT mutation)
- I also have at least one of the gene muttions seen in mastocytosis ( I dont know if I have KIT mutation but I know I have a mutation of PDGFRB (which is the 18th listed gene mutation for masto from text mining at the jensenlab website).
- I go into shock like symptoms easily eg if I hurt myself I'll go shivery, feel freezing to the point Im shaking and will feel ill and it takes me quite a while to stop shaking.. Ive almost rang an ambulance as Ive had such a severe body reaction. (I friend has actually had to help to bed after Ive just twisted an ankle as I have an all over like shock response to something like that)