Hi, @charlie2020 -

Good that you'll be seeing a neurologist. How long do you have to wait to see a specialist like that in the UK? Here in the USA it's several months, unfortunately.

I tried PT for quite a while to pretty much no avail, both before I was finally diagnosed and afterward. I have camptocormia and also DISH (diffuse idiopathic skeletal hyperostosis which has caused hyperkyphosis in my upper spine and neck) -- quite the combo. It's frustrating. My core is weak, and they don't know why.

I also was fitted for a TLSO back brace about 1.5 years ago. It did almost no good, alas, so the physiatrist told me it was useless and to stop trying it.

Before that, I'd bought two special canes to try to pull myself upright, but they wound up causing me to need surgery in each hand for carpal tunnel syndrome. Sigh...

Earlier this year, I was prescribed a platform walker (rollator) to use in my home, so at least I get the occasional experience of standing upright-ish for a short burst here and there. The "platform" lingo means that it's high, with armrests. It's not easy to get to the point where you're happy you got such a monster (mine is big and bulky), but that's what camptocormia has brought me to.

I also recently dipped into savings and bought an expensive Danish-made rollator that's not meant for camptocormia but is very lightweight and compact and rather cool-looking (as these things go). It fits easily in the trunk/boot of a car and is good for outdoors and indoors. It doesn't look like something your grandma would use. So far, so good. If you want to check it out, look up "byACRE rollators." There are several kinds.

BTW, I'm a rare bird in that I have truly idiopathic camptocormia, meaning no associated neurological disorder or myopathy or myelopathy.

Good luck, Charlie. I hope you get some answers and help!