have you made an internet research of conditions that are similar to yours?
Also research by pictures, using words that are representative of your condition.
You know how it looks like, how it feels, how it developed. No one else than you does.
Be propositive and try to give a hint to doctors about what needs to be checked. Through descriptions of websites you can also find which exams are used to diagnose each condition and you can compare with the exams that you have already done.
Not knowing exactly your problem, I thought of sclerodactyly