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Neurology  (Expert Forum)
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b12 deficiency or something else??
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MedHelp Member's Question

b12 deficiency or something else??

by tjmorrell, Dec 16, 2006 12:00AM
Hi, I am a 36 yr old female-started having tingling in feet/legs back in April '06, pain shortly after. Then started in hands/arms, worse at night, at times would wake me up. In July, woke up with left leg numb from knee down (intense pain in leg night before). Blood tests showed B12 deficient in Sept, reading 101 (normal 200+?). By then was unable to focus, fast heart rate, extreme fatigue, but couldn't sleep at night because of pain, had lost 30 lbs (since May), no appetite, pain in face, pressure behind eyes, and legs (especially left) heavy, hard to walk, and twitching, in mostly legs. Immediately got B12 shot, another days later, then 5 shots once/wk, now once/month. Diagnosed with pernicious anemia from Shillings test. Even after B12 was normal, had left side of face go numb, couldn't squeeze with left hand, whole left side weak. Another time, left leg too weak to walk upstairs.  Am on 600mg Neurontin in am, 600 mg at night, has taken away most of pain in arms, face, right leg, but still pain and pressure in left leg at times. Had other tests, all normal-MRI+CT of head, EMG, blood tests for Lyme, Celiac, Myeloma, upper GI series, chest, back+left leg xrays, saw rheumatologist who suggested Fibromyalgia, neurologist who said could be B12, but didn't want LP or MRI of spine, and that B12 shouldn't cause such weight loss, check for cancers. My dr thinks possibly MS, and says wait and repeat MRI in 3 mnths. Have only gained 2 lbs, still extremely faint when standing up, and still wake up with pain in left leg.  Any ideas on other tests, or how long this will last?  thanks
Doctor's Answer

by CCF-Neuro-M.D.-SH, Jan 09, 2007 12:00AM
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.  

   The symptoms and story that you describe are consistent with B12 deficiency, but other possibilities should be ruled out as well.  B12 deficiency can lead to demyelination of the corticospinal tracts (control muscle movements) and the dorsal columns (can result in numbness and tingling, loss of balance and a sensation of not knowing where your feet are).  This is called subacute combined degeneration.  B12 deficiency can also lead to memory problems, depression and even psychosis.  The weight loss does not seem to fit in this clinical scenario.  I am also suprised at the pace of the progression of your symptoms and would recommend a thorough workup.  Spinal tumors, other causes of demyelination in the spine (such as multiple sclerosis) and lymphoma can all cause the same symptoms.  The tumors/lymphoma can also be associated with weight loss.  I would recommend an MRI of the spine (cervical, thoracic, and lumbar) with GAD contrast, a lumbar puncture (to assess for inflammation, IgG index, oligoclonal bands, and cytology/flow cytometry to assess for lymphoma) and a CT scan of the chest/abdomen/pelvis with contrast (as a general survey for cancer).  I agree with B12 injections for replacement and would recommend following your methylmalonic acid and homocysteine levels in addition to your B12 level to assess your response.

I hope this has been helpful.
Member Comments (16)

by tjmorrell, Dec 16, 2006 12:00AM
sorry, forgot to mention that I also had sensory issues, like toes feeling wet, feeling like water dripping down my leg, all on left side, all after B12 levels were normal.  thanks

by burningpains, Dec 17, 2006 12:00AM
Hi there.  Lyme blood tests (the basic ELISA) come back negative in an extremely high amount of people who have Lyme.  They are pretty much worthless tests.  You should see a Lyme-literate M.D. and have your blood tests sent to a lab such as Igenex.  You should be checked for mercury toxicity, because Lyme and mercury (and other metals and toxins) work synergistically in the body.  Did you have your CD-57 tested?  Was it low?  Often, people who are immunosuppressed don't create the antibodies that would normally be found people who have healthy immune systems, so if you have a candida problem, mercury problem, high viral load, etc...it's not surprising that your antibodies aren't numerous.  just like me!  Do a google search for lyme support groups and message boards where you can get a lot of good information.  A lot of mainstream doctors, unfortunately, do not realize how common Lyme, mercury toxicity, and candida problems are and say "it's just a fringe group."   Or "we don't have Lyme in this part of the country."   I think this is criminal and dead wrong.  Good luck to you!  I'm not saying 100% that you have Lyme, but it shouldn't be ruled out.



P.S.  The water dripping sensation is very common with Lymies.  I have it.  It drives me crazy!

by tjmorrell, Dec 17, 2006 12:00AM
hey, thanks for the info-I will ask to be retested again.

by Rescuepoor, Dec 21, 2006 12:00AM
I would ask for a complete Thyroid panel.

by NURSELPN