Seeking advice
 

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!!

Hi Curls!!!
 

Welcome to the forums! I can sure relate to your frustrations in finding those elusive answers you long for. I myself am as yet undiagnosed, and I'm actually supposed to be going to the Mayo myself early next year. Maybe you could tell me a little about what to expect?

I've never has B12 shots myself, but there are a lot of people on different forums who swear by them. I take a multi-vitamin, and have been meaning to ask my PC about the advisability of further vitamin thereapy. I would think that if you asked your PC, he/she should be amenable to the request. I don't think there's much if any danger involved.

I certainly hope you the very best in your quest for personal improvement. I also hope to see you often here on Neurotalk. There are a lot of smart people here who can offer a wealth of helpful advice.

Wishing you the very best,
Idealist

Thanks for the welcome Idealist. Well, the Mayo runs like a well oiled machine. I was very impressed. The Dept of Neurology was my floor and after you check in a schedule is given to you. It states the day, time and type of test to be performed. But the one thing that really impressed me was that the tests were almost painless. And I say almost as I did feel pressure when I received the lumbar puncture but that was it. I suppose if one performs the same test over and over again they better be good at it.

Plan on being tired at the end of the day as there may be some waiting around for the next scheduled test and if they say 7 am they mean 7 am. not 7:05. I live in L.A. so I was concerned with travel and lodging. The Mayo will send you information regarding hotels, motels and airports which relieved a lot of anxiety. The Clinic is quite large and it is connected to tunnels which open into hotels, restaurants and a mall. I was there in Dec. so this set-up was great for me as I was in a wheelchair. It was incredibly cold outside.

The one thing I regret not doing was preparing questions before hand. It is all overwhelming and you need to be prepared. I had tests I've never heard of. If you have a laptop bring it so you can be informed about the next procedure. I know you will be impressed. Good luck!!