Bob Morris' Personal PN Story Line
{My PN Story and Vitamin B-12}
I am a male in my early 50's. For over the past five or six years I have been suffering from severe Gastric Reflux problems which had been causing ulceration of my esophagus. This was treated very effectively using a drug called Omeprazole to reduce the acidity in my stomach. The trade names of the medication vary from country to country but the most common brand name in Australia (where I live) is Losec. I understand the US trade name is Prilosec.
After a couple of years of treatment, I noticed that I was getting pins and needles and numbness in my lower arms and hands; particularly at night. I was also being treated for severe depression. I was used to having all sorts of unexplained side effects to the medicines that I was taking, and didn't link it to the Omeprazole which I had been taking for some time with no apparent ill effects.
After ceasing the anti-depressants, I noticed that the numbness and tingling was still there and that it appeared to be getting worse. My doctor blamed the way I was sleeping. As we had just moved to another house, I figured maybe the change of routine had affected how I was curling up in bed.
Then late last year I noticed that I was experiencing strange sensations in my feet. I felt as if I was standing in a puddle or that the carpet was wet when it obviously wasn't. My toes started to tingle, then to burn and then have numb spells.
I saw the doctor again and received a provisional diagnosis of Peripheral Neuropathy. Blood tests showed my Vitamin B-1 level as "borderline" and my B-12 levels as "normal" (I later found it was a "Low Normal"). I wasn't advised of the specific levels and didn't know enough about how it worked to ask.
I was referred to a Neurologist who carried out nerve conduction tests and confirmed the diagnosis of Peripheral Neuropathy. By this time I had discovered the Neuropathy Association Bulletin Board (http://www.neuropathy.org) so I knew enough to ask what type of PN I had. The answer - it was "Idiopathic" (i.e. of unknown cause) since I didn't have diabetes, wasn't alcoholic, didn't use illegal drugs or have HIV, or any of the other commonly recognised causes. The answer wasn't a lot of help. I was prescribed Vitamin B-1 tablets and told to come back in six months time to see how things were developing.
I specifically asked the Neurologist whether the prescription antacid medication (Omeprazole) could be affecting me. He told me definitely not. Shortly after, my General Practitioner ( I think you refer to them as Primary Care Physicians in the United States) become suspicious of the Omeprazole as a result of another patient's reactions to it. He took me off the drug and I saw an almost immediate reduction in the cramping/electric shock type pains that I had been experiencing in my arms and legs. I then posted a query on the Neuropathy Association's Bulletin Board and received responses from several people providing links to medical abstracts which linked the medication to the prevention of absorption of B-12 by the body, and the ultimate development of PN. It should be noted that not everyone who takes antacid medication will necessarily develop PN, but more and more doctors are now realising the risk of vitamin absorption problems arising from long term use of it. Simply taking a vitamin supplement in conjunction with the antacid medication will generally prevent the problem developing.
In my case, the GP didn't believe that I had a B-12 deficiency as I tested within the acceptable normal range. After providing him with the AMA abstract about B-12 testing (see next paragraph), he arranged for the additional tests. These showed that the original B-12 reading was most probably inaccurate and so he started me on B-12 injections. Within two weeks I started to see an improvement. Now several months down the track, I have almost totally recovered normal feeling and sensations in my feet.
My hands which the nerve conduction tests showed were more badly affected have also improved markedly. I can now hold a pen and can manage to type and write without major problems. The pain is almost non-existent. Instead of facing a future of being progressively more and more disabled, I am now starting again to do things that I thought were gone for good.
If you want to obtain the highly technical but invaluable document on B-12 testing procedures visit:
http://archinte.ama-assn.org/issues/v159n12/full/ira80533.html
You can then download it and print it out easily in either Adobe Acrobat format or with any Word Processor that handles HTML files and take it to your doctor. If you are really computer illiterate you can even print it out one screen at a time, but that may take a while as you get a lot of extra unnecessary graphics. I have printed multiple copies and now give it to any doctor who queries why I am supplementing my Vitamin B-12.
One of the most frustrating things about Peripheral Neuropathy is that although we share so many of the symptoms in common, the causes are so very diverse. Another frustration is that among the medical profession there is so little knowledge about what causes PN and how it should be treated. All we can really do is to share our personal experiences, our successes and our failures, in the hope that maybe another sufferer can be helped by what helped us.
I wish each of you a pain free day (and night),
Regards,
Bob Morris
bobmaree@hotmail.com
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