A boy, his brain, and a decades-long medical controversy
1–10 of 188 posts
Re: A boy, his brain, and a decades-long medical controversy
#2This rings true.
I have something wrong with me. I’ve spent many years of my life trying to figure out what it is. But never fully have - it’s sick, but it seems like most doctors operate under “you have symptoms, I order a few tests, they were negative, guess we’ll never know, fuck off lol”.
It sucks. I hope these families make progress.
Re: A boy, his brain, and a decades-long medical controversy
#3This rings true. I have something wrong with me. I’ve spent many years of my life trying to figure out what it is. But never fully have - it’s sick, but it seems like most doctors operate under “you have symptoms, I order a few tests, they were negative, guess we’ll never know, fuck off lol”. It sucks. I hope these families make progress.
Have you been tested for Lyme Disease? I know several folks with it, and they had very awful times (unnecessary surgery even) getting diagnosed.
Re: A boy, his brain, and a decades-long medical controversy
#4This rings true. I have something wrong with me. I’ve spent many years of my life trying to figure out what it is. But never fully have - it’s sick, but it seems like most doctors operate under “you have symptoms, I order a few tests, they were negative, guess we’ll never know, fuck off lol”. It sucks. I hope these families make progress.
Have you been tested for Lyme Disease? I know several folks with it, and they had very awful times (unnecessary surgery even) getting diagnosed.
find another dr for better thoroughness, but no offense... dont take advice from random internet people pushing you to check for a specific disease without having seen a single symptom.
Re: A boy, his brain, and a decades-long medical controversy
#5[deleted]
Re: A boy, his brain, and a decades-long medical controversy
#6This rings true. I have something wrong with me. I’ve spent many years of my life trying to figure out what it is. But never fully have - it’s sick, but it seems like most doctors operate under “you have symptoms, I order a few tests, they were negative, guess we’ll never know, fuck off lol”. It sucks. I hope these families make progress.
Most doctors today seem to memorize and execute flowcharts and leave creative thinking in undergrad. Anything that deviates from the norm results in “fuck off lol”.
Re: A boy, his brain, and a decades-long medical controversy
#7This was identical to my story as a child/teenager. Went through multiple doctors for a year or two. It was finally diagnosed as PANDAS. A few months of antibiotics and about 6 months later I returned to normal. Still functional as of many years later. I’m glad this is being solved and caught earlier.
Re: A boy, his brain, and a decades-long medical controversy
#8This rings true. I have something wrong with me. I’ve spent many years of my life trying to figure out what it is. But never fully have - it’s sick, but it seems like most doctors operate under “you have symptoms, I order a few tests, they were negative, guess we’ll never know, fuck off lol”. It sucks. I hope these families make progress.
Have you been tested for Lyme Disease? I know several folks with it, and they had very awful times (unnecessary surgery even) getting diagnosed.
I can confirm that Lyme Disease is on the rise and has very strange symptoms:
https://www.bayarealyme.org/about-lyme/lyme-disease-facts-st...
Re: A boy, his brain, and a decades-long medical controversy
#9This was identical to my story as a child/teenager. Went through multiple doctors for a year or two. It was finally diagnosed as PANDAS. A few months of antibiotics and about 6 months later I returned to normal. Still functional as of many years later. I’m glad this is being solved and caught earlier.
Have you been on antibiotics ever since? Or can you stop taking them eventually?
Re: A boy, his brain, and a decades-long medical controversy
#10This rings true. I have something wrong with me. I’ve spent many years of my life trying to figure out what it is. But never fully have - it’s sick, but it seems like most doctors operate under “you have symptoms, I order a few tests, they were negative, guess we’ll never know, fuck off lol”. It sucks. I hope these families make progress.
hEDS, the disorder I have, is somewhat controversial like PANS is. the symptoms include hypermobility (overly flexible), spontaneous joint dislocations, widespread pain, joint degeneration, easily damaged skin, fatigue, immune dysfunction and tachycardia. ~2% of the population is hypermobile, but healthy, and don't have those symptoms. hEDS is known to be heritable, but the genes haven't yet been identified. many doctors conflate hEDS with healthy hypermobility, and don't take it seriously.
I realized on my own that I met the criteria, but the first few doctors I saw wouldn't listen to me, even after my arm popped clean off my shoulder. now I have an excellent care team, but it took me a couple years of fighting to get a diagnosis.