Hi Lisa,
I'm sorry about your news, but it's better than being told "it's all in your head". Hopefully, it will progress very slowly... and you never know, a new treatment could pop up tomorrow. At least we are fortunate to live in an age where there are constantly new developments and treatments.
Due to 14 years of progressively worsening all-over joint pain, twitches, inability to empty bladder and searing back pain, I'm also seeking a diagnosis, and have no idea what they'll find in the end. But I am darn sick of people telling me I "look okay". Grrrrrr!
Once again, I'm new here, and just getting the hang of this forum, so after reading your story, I wanted to tell you that you're in my thoughts, and I wish you the very best.
