This is not really a new thread, but it seems the only way I can access this site and post on it - in the hope that my story may help others.
I am a 59yo male lacto-ovo-vegetarian of about 25yrs standing. About 5yrs ago, I began to get a "bzzz-ing" feeling in my hands when I nodded my head. Eventually, irritated by the phenomenon, and suspecting sponylosis/spondylitis, I went to see my GP. He agreed that these were possibilities, and sent me for an X-ray, which revealed some bone ingrowth in the cervical area. By now, though, the "bzzz-ing" had spread to my feet - something not so easily explained by intermittent pressure on my spinal cord when I nodded my head. My GP is a young man, and was quite new to the job at the time; he confessed himself puzzled. (Yes, we both now know all about Lhermitte's sign, and what can cause it; but that is now - this was then.) He decided to work from first principles, took bloods, urine samples, etc, and called me back a couple of days later. I was B12 deficient. (Knowing now how misleading the serum results can be, I think that I was very lucky that the deficiency was picked up at all.) I injected myself with hydroxocobalamin (1mg every 2 days for a month) and most of the "bzzz-ing" went away - but never completely.
Owing to an administrative error, I was not told of the need to continue the injections monthly or so after the initial treatment, and my GP (through the same error) was unaware that I had not been told.
In April 2007, I started losing my memory, and becoming confused; I found reasoning and deduction increasingly difficult; this proceeded to blurred/double vision, sweeping and distressing personality change, aggressiveness, paranoia, and hallucinations. Eventually, I could not walk, stand, or string a sentence together, and I had little control over my bowel movements. My GP became almost as frustrated as I was because of his inability to determine a diagnosis, and, eventually, I had to be admitted to hospital as an inpatient.
The doctors there turned out eventually to be about as much use as a chocolate teapot, although they did initially show willing. They suspected a neurological problem. I was X-rayed, CAT-Scanned, MRI-Scanned, Lumbar Punctured, Ultrasounded, etc, etc. I was discharged after a week with a Zimmer frame; the doctors (Medical and Neurological) said they suspected I might be suffering from malnutrition (!!??).
I live alone, in a fairly isolated location; I could not walk or drive, I faced losing my job, and my life was in ruins. I started planning my suicide, and I dulled the world by drinking heavily (vodka ordered in quantity via the Net, and delivered to my door). A friend eventually found me at the foot of the stairs, having s--t myself; I was promptly re-admitted. My state was a gift to the doctors; without further ado, with no further examination, and with no relevant supporting history, they decided that I was clearly a long-term alcoholic, and discharged me once again.
My daughter, and my work partner trawled the net, and decided that I was probably suffering from rip-roaring B12 Deficiency - blood serum results notwithstanding. They printed off some of what they found, and took it (along with me) to my GP. He was mortified at having missed the diagnosis, and apologised profusely (How I love and respect him for that, and for his earlier admission that he was groping in the dark. How much more honest and gallant than those arrogant know-nothings in the hospital). He totally agreed the findings and prescribed me a carpet-bombing quantity of hydroxocobalamin. He also said that - faced again with someone presenting with my symptoms - he would disregard "positive" serum results. Bless him!
My brain began to work again, and I became a Net expert myself, turning up Russian, Japanese, and Chinese papers on B12 Deficiency, its effect on the CNS, and the importance of methylcobalamine, rather than cyano- or hydroxo-cobalamine, to nerves, and to the myelin sheaths in particular. I followed these threads to the relevance of folic acid, and to the effects of "aggressive" doses of B12, Alpha-Lipoic Acid, and Acetyl L-Carnitine.
I am now back at work; drink is no longer an aspect of my life; and though I still have orthoses supporting my ankles, my walking steadily improves, and I intend doing without the orthoses from about March onwards. I hope to be back walking Scotland's mountains again in the summer. It's a big step from being in a wheelchair just 4 months ago! The Lhermitte's sign has gone completely, as has the "bzzz-ing" in my hands.
I list the "medication" I am taking - in the hope it can help others.
Folic Acid: 5mg oral daily.
Vitamin B "Strong": 2 Tabs oral daily.
Thiamine: 100mg oral daily (Yes, I know that I'm not an alcoholic, but I'm having so much success that I am reluctant to discontinue anything!)
Methylcobalamine: 10mg sublingual daily.
Alpha-Lipoic Acid: 600mg oral daily.
Acetyl L-Carnitine: 500mg oral daily.
Hydroxocobalamine: 1mg i/m monthly.
Methylcobalamine: 1mg i/m twice weekly.
(Injectable methylcobalamin can be obtained on the Net, but I am having trouble with either the supplier or the shipper, and - though I have paid for it - it still hasn't arrived. In the meantime, though, I have searched for (and found) reputable US and UK sources of sublingual liquid-form methylcobalamin. (Dissolved in pure water and glycerine, with sodium benzoate and natural flavouring as the only additives). I cautiously tried injecting this, and have experienced no side effects or untoward reactions.)
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