Pain from Rare Genetic Metabolic Disorder

Hi,
I recently found out at the U of M that I have a very rare genetic metabolic disorder called MADD II. It caused me significant muscle pain, weakness and constant fatigue. I don't see any groups here for genetics or metabolism. I'll either be coming to Mayo or Mount Sinai for further testing and treatment options. I'm wondering if anyone else has this and goes to Mayo for treatment? I started Celebrex and low dose Naltrexone about 9 days ago. I don't find either of them helping yet.