Hello @porthole, Welcome to Mayo Clinic Connect. Thank you for sharing this information. I found the link and thought I would post it for you. I think I also have this condition and was planning to discuss it with my primary care doctor at Mayo this Spring when my annual physical comes up.

Bent spine syndrome as an initial manifestation of late-onset multiple acyl-CoA dehydrogenase deficiency: a case report and literature review -- https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-015-0380-7

I also found another article on the topic at the National Organization for Rare Disorders.
Riboflavin Transporter Deficiency -- https://rarediseases.org/rare-diseases/riboflavin-transporter-deficiency/

Can you get a referral from your regular doctor to a specialist?

Hi @porthole, I noticed that you wished to post URLs to web resources with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the links you wanted to post are not spam. Please allow me to post them for you in addition to the resources @johnbishop also found.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2989190/
https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-015-0380-7
https://ods.od.nih.gov/factsheets/Riboflavin-HealthProfessional/#h5