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sdsyd

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Hi all. Went back to neuro today and he says he is baffled by my symptoms. I am going tomorrow to have B12 and CK checked and then he recommended getting a second opinion and going to either Denver ( University of Colorado) or Mayo.(Rochester) He said it would be pointless to do an EMG if we are going to one of those places because they will just repeat the tests, and that they are very administer specific. He doesn't want to elude to a diagnosis, but it certainly could be the beginning of MND, which is why he recommends going to see a specialist, and he could follow up on my care after I go to one of those places. He notices some more atrophy in the left arm, but definately not marked. SO- I am still undignosed but my question to any of you is this- we live in SD. Denver is a lot closer, but is Mayo Clinic better? Or should I see a different neuro here?

S.O.S. I am frustrated. I was really hoping this guy could give me a diagnosis. My MRI's are all clean- even w/ contrast dye.

I know many of you understand the frustration of not having answers...which is why this is a great place to come and seek advice from people who have been there. AND MAYBE JUST MAYBE I just need some B-12 shots. ( fingers, toes and eyeballs crossed!) He again commented that my RBC's are a bit enlarged and that was the only comment he made on my previous bloodwork.

THANKS GUYS!
~Cindy
 

patricia1

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You see enlarged red cells in folate b12 deficency and alcoholics liver disease.

Pat
 

sdsyd

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Thanks for the info Pat. I did some researching as well, it looks like a B-12 deficiency can cause a host of neuro symtoms, so I'm hoping maybe I'm close to getting answers. I hardly drink enough to be considered an alcoholic though. LOL.

My sister reminded me that we both have a chromosomal abnormality- Inversion of Chromosome 1. Years ago, she lost 2 babies and when I was pregnant with my 1st child- (16 years ago!) they ran a DNA on me and found that I had it as well. We saw a genetisist, who at that time told us that I had a risk for not being able to carry a baby full-term. ( I carried 3 successfully! :eek:) ) But that was an awful long time ago- Science has advanced and we were alot younger then, our main concern was the pregnancy and babies health. Didn't ask many questions, etc. Does anyone know about any link to chromosomal abnormalities- particularly chromosome 1 relating to neurological problems? I did a bit of googling today, but there is so much to fliter out when looking up something so specific. I am certainly going to mention it to my Dr. and to Mayo when we go.

Thanks and hope everyone had a Safe and Fun 4th of July!

~Cindy
 

patricia1

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lopatcong NJ
I wish you well!

Pat1
 
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