Hi all. I've been reading posts for the past few months and have found answers to a few of my problems that my doc never addressed. My question about my red burning feet in hot weather was dismissed as a non-issue along with cold, bone numbing hands in chilly weather. It's these irrating things that can make you crazy and finding a solution is great. This site is great.
I have been ill, for lack of a better word, for the past 11 years. I have seen numerous neuros and even spent seven days at the Mayo in Rochester undergoing a lot of tests. The Clinic sent me a 19 page report summarizing all of my tests which I read and filed away three years ago. I am ataxic, have muscle atrophy and a neuropathy. I have been misdiagosed with als, (11 years ago), misdiagnosed and treated for CIDP for two years with IVIg with no improvement. The Mayo finally performed a lumbar puncture and nerve biopsy which came out negative. I did receive a probable dx of SMA but DNA and other blood work came out negative also. It was suggested that I might want to seek out another opinion to rule out the SMA. My faith in docs is pretty much nil.
I have been reviewing my lab tests lately and I can't find a B 12 test anywhere. Could this be possible? My paternal grandmother had pernicious anemia and my maternal grandmother gave herself B12 shots on a regular basis. I want to start a vitamin B12 therapy, maybe complimentary vitamins also but I don't know where to begin. I don't think Centrum Silver is going to cut it. I have read that 1000 mcg of methylcobalamin daily is recommended. Is there anything else? I'm not looking for a cure as I doubt there is one but I would like to try a different avenue of treatment. Can anyone please advise? Thanks!!