not really sure what to do.

[kirbtopia]

hi all, hope i'm not taking up too much of your time. this might be a touch long. i do apologise. i'm e. i'm 21; and i have urticaria pigmentosa.

for the past few years or so; i've been having trouble with my heart. fainting episodes, palpitations; dizziness, i've been diagnosed with vasovagal syncope from my doctor at a hospital. he says my heart issues may be caused by my u.p - and i had the option to go two ways with my treatment.

i was diagnosed as a very small child and basically grew up with the idea that u.p was just a silly skin disorder that affects nothing else and basically just means i have some fun cool pigmented marks on me. my dad calls them my 'special spots' :). as a result, believing that it was the former silly fun special spots skin condition, i chose the more heart related route - but i didnt end up taking the medication i was perscribed (called mididrine?); because i was really scared about taking medication. i know that sounds really silly - but my family has a serious history with drug dependency, and i really hate the idea of drugs being necessary for me to live. it just massively freaked me out - it was a massive step up for me to go from 'sodium pills' to 'medication that they use in the eu to treat cancer'; especially if you're drug wary and want to be able to cope on your own, but i'm not sure thats an option for me anymore.

recently i checked out the resource he gave me to the uk masto org, and researched a bit more on what u.p does - but i'm conflicted on what to do. i'm scared to talk to my doc about all of this and as such haven't seen him in a while. i know its very silly not to take a medication - and i'm really trying to get better with it - not just for this, but i have no idea where to take my treatment as all anyone says to me is that i'm a 'medical mystery' and that i'm a 'curious case' and they keep asking me what i want to do. i just want them to figure out what the best course of action is. i have absolutely no idea how to handle any of this and i'm really at the end of my rope. any advice would be appreciated.

[Swissgirl]

Hi. I suggest you post this on the UK Mastocytosis Support Facebook group. They are much more active than the group on Health Unlocked. Hopefully you will get some support there. facebook.com/ukmasto/

There are also members with MCAS in the group. I have both MCAS and autoimmune thyroid disease, amongst others.

[Blanketttime1]

oh the curious case! i once had a doctor take my hand and tell me i had more than one illness affecting more than one body system, that it would confuse doctors and "they don't like to be confused." i recently went to a dermy about this odd skin carving thing going on with me and i could see her flapping. she hadn't a clue what to do with me. first she told me to see a neuro, then i mentioned my upcoming rheumy appointment. i kid you not, she said, "either a neurologist or a rheumatologist," as if they're interchangeable!!