The Neurologist

  An appointment with a neurologist probably isn't on the typical list of doctors to see when diagnosed with TS, however I have already been seeing a neurologist for about a year now.  Since I was due for a follow-up with him, I decided to pose some questions.  I have found my neurologist to be one of the most intelligent people I have met and last year he was actually the one that discovered my Vitamin B-12 deficiency.  After initiating B-12 injections, I have found such a great relief to a lot of my joint pain (a random, unexpected, yet positive side effect to adding B-12).  Since he caught something, seemingly simple but apparently not since no other doctor did, I posed the question of testing for Celiac's disease and the MTHFR test, which will tell you if your body is able to break day folate/B vitamins appropriately.  This test is used for two reasons: 1) depression that has not been alleviated with anti-depressants because your body may not be synthesizing correctly and 2) recurrent miscarriages due to blood clotting issues.  Although he stated he appreciated my research and feels I will have to be an advocate for myself, he feels I need to go back to all the other doctors and provide this new diagnosis to them and allow them to run a full gamete of tests and not just pick and choose.  He said he is shocked to find out that I have TS because I am not the typical phenotype.  He looked at me in amazement and stated "I have never met anyone like you!"  Any other time that statement would have sounded seductive lol, but in this case I told him that was not necessarily a good thing.  He told me he had never met a mosaic TS before, but would definitely be doing some research for me.  At least I have him in my corner now. 
  My husband and I decided to call around to see if any of the pediatric TS clinics can recommend an endocrinologist that specializes in TS for adults. Apparently that is definitely a direction I need to head because some signs of pre-menopause can include.... joint pain!  So there may be a lot of my issues that can be fixed if we can see to get any hormonal issues straightened out.  I had never had a hormone check because... well I'm only 29, so who would have thought?
Just trying to navigate through all the craziness....

~T.