MT scary health issues mentioned need to find someone to RP practice a conversation w

[dreamers]

We don’t have a T at the moment and our current joke of med insurance won’t cover a T except for emergencies. Yes we feel angry enough to kick things but that’s not what they consider an emergency... so yeah... meanwhile, scrolling for scary med stuff....
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Okay so long story short, some of us have Asperger’s syndrome which has given us expert level academic medical knowledge without the creditials to back it up. Despite the lack of MD behind their name these alters know a lot. They have been reading medical journals for fun for the last 23 or so year ( since the body was 13) and at the moment, they are about 80-90 percent certain that our body has either skin cancer or pre-skin cancer.

So far all the drs we have been to have done zero diagnostics testing they just keep giving us different medicine to try on the rash which is all over. We have had enough. We want them to to biopsy stuff. All the crap they keep having us try has side effects. Daniel is a chemist and he is helping the asperger’s guys figure out stuff to try based on what they think it is but only because they promised to continue seeking diagnostic confirmation. He thinks that throwing medicine at unconfirmed stuff is very dangerous. Now, he is starting to think they aren’t really trying because he doesn’t understand the American medicine system since he is in England.
So we need to find someone ( not necessary from here) to practice the no more throwing medicine at this until we know for sure what it is conversation. It’s becoming a major strain on our most important relationship: Daniel ( who we just call dad to make it easier for outside mono-minded people). Thanks for any suggestions.

[phoenix22]

Two years ago I had an ovarian problem diagnosed. Despite this the hospital deemed me fit to discharge.
I refused as I had ,like you,done research on the symptoms...turned out ( obviously ) that I was correct. The tumour was extremely rare but this shouldn't have stopped the medical staff from looking it up too.
The surgeon had the grace to admit I probably knew more about it than him but the consultant I have been seeing since ( from the hospital that discharged me ) has been consistently belittling about it..
The research on this OC was difficult to be honest ...I waded through medical papers ,crossed referenced words I didn't understand and made notes..it probably saved my life.
From what you write you too have done this. Maybe just presenting your evidence to a Dr might get one to change their mind and at least investigate properly..
Not much in the way of a suggestion but just wanted to say been there done that.

[dreamers]

Thanks for letting me know I am not alone in my experience. Here it seems like if you are on state insurance no one can be bothered with doing their f-ing job. I’m starting to think the lack of private insurance might remove our birthday privileges. Anyway thanks I needed to hear it’s happened to others before me and they got through it

[phoenix22]

I think what gets me the most is the dismissal of my research by Drs that maybe want to play God. Its almost like you are insulting them in trying to find out for yourself what is wrong.
My symptoms were utterly dismissed as being part and parcel of women of a certain age stuff...
Tbh this seems prevalent no matter what age a woman is!
From the time I first saw my GP to the operation must have been about two years...I felt demoralised throughout and frankly it takes a special kind of attitude to continue telling drs the same thing.
Once they finally got the picture things moved very fast...phone call on the Thursday, met the surgeon on the Friday and operated on the Monday..but by leaving me so long I now have irreversible changes to my body that causes immense distress.
I went with my gut feeling and my intellect...think maybe you should do the same.
Good luck
x M