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hi graham,
thank god someone who knows what this is like,
yes i have b12- injections once a month now was getting them once a week for 2 years but the nerve damage was to far gone.They check it once every 2 months because they might have to give them to me every other week if low. i have the inherited pernicious anemia. they did a shillings test on me is how they finally found out.but it seems to me since this caused this pn that no matter what exercise i do the pain and the wasting gets worse. i think i have read all these post and sometimes i wonder about ms because it has so many effects to body as does pernicious anemia, i never would have dreamed in a million years that a vitamin deficiancy could mess up your life so bad. thanks for responding to my post go to neurologist in march he is so busy it takes forever to see him but ive noticed my body has gottten alot worse since last time i seen him. i know this may sound crazy but im thinking about making a list of differnet things that has gone wrong since my last visit to him . u take care
Hello again,

Well Lisa, you asked, so here goes. I started having problems early in 98, I did not pay too much attention at first, it was just occasional tingling in the lower parts of both legs. A few months later this was becoming more persistent, I also had slight tightness in my right calf and I started to feel slightly light headed. My GP did not think this was anything to worry about, although I knew something was going very wrong.

Looking back, this was the big stumbling block in finding what was going wrong, I pushed to have further investigation, and as my doctor did not think it was neccesary, he eventually sent me to a neurologist although his letter more or less said there was nothing wrong and that I just needed reassurance. I still cannot understand why he took this stance, particularly when I had no history of stress or anxiety and had been at the same practice for over 20 tears, he should have known better. The Neurologist did a quick once over and that was that (no blood tests at all by neuro).

As no further investigation was to take place I was left with the option of doing nothing, whilst I was getting worse, or trying to find what was going wrong. I'm used to investigating things (that was my job) and tried to put as much information together on the internet to see what possibilities there were for my symptoms. Other than degenerative neurological diseases, which the neuro said I definately did not have, the one condition which could cause simlar neurological symptoms was vitamin b12 deficiency. Even when I looked at the causes for this condition, the fact that a few years earlier I had started having stomach/bowel problems (swelling and discomfort) which a colonoscopy & endoscopy identified as severe in flamation in the duodenum and also at the top of the small bowel, the Ileum, which is the site that b12 is absorbed into the body, fitted in with problems which could arise.

"Eureka", I thought, and I headed to my GP to full of hope. My b12 was tested and was 289pg/ml with the range being 155-1100. I also knew at this point that low/normal states could be a problem but my GP was adamant that it was OK. At the start of 99, after my Gp had reluctantly sent me for another neurological examination, where I was basically told I was not listening to the first neurologist, I received a letter from the 2nd neuro saying all tests were OK but he noted that my b12 level was "a bit on the low side" at 197pg/ml. Again I headed to my GP showing how this had dropped, but again I was told it was still ok.

I moved GP in 2000 as my symptoms were far worse and nothing was being done. My new GP tested my b12 at 192 and a few months later at 189, but still I was told this was OK. I was sent back to the first neuro, who told me before we started that she thought this was all stress, even though she found I had reduced ankle responses and some nerve abnormalities. She knew surprisingly little about b12 deficiency. She did however agree to carry out a Schilling test, which I passed, although at the lower end of the pass scale. Again I was left with no answer.

In Dec 2002 I was sent for hearing tests, as I had developed tinnitus and my hearing was becoming a problem. I saw two doctors, two months apart, who told me they thought my tinnitus and hearing loss was due to a neurological problem and asked my GP for a fresh neurological opinion. My GP was very unhappy about this and reluctantly arranged a third Neurological opinion. I saw this Neurologist in Sep 2003, the appointment took about fifteen minutes tops, and ten of that was me listing what was wrong. I was told I had seen two very good neurologists and he did not see what further could be achieved (fresh opinion?). For my examination I merely removed my socks and was told he would ask for my blood suger to be checked but nothing else. I again raised the possibility of b12 deficiency, but he would not even consider re-checking this.

This was the absolute low point of my life, I knew I was not being listened to and had been dismissed with no posibility of any further investigation. In desperation I searched to see if I could arrange tests myself, and found a company that would collect blood and submit it privately to a lab in London. I had this done two days after I saw the neurologist and my tests came back b12 abnormal at 165ng/l, normal range 179-1162. The report also suggested that my neurological symptoms could be as a result of b12 deficiency. I handed the report, and a letter, into my GP who immediately changed his views and decided to start b12 treatment.

Now this is where Sod's law always comes into things. Before I start my treatment, my Gall Bladder goes on the blink, I end up jaundiced and with all my blood levels pushed sky high. My ferritin by over 1000% from earlier in the month, and my b12 by over 400% to 577. In hospital they are not sure why my b12 rose so sharply, although it may have been to do with the blockage in my gall bladder causing presure on the liver which realeased any stores.

My Gp then tests my b12 evry six weeks/ two months and it dropped to 249, 197, and 170. The last test after a month of oral b12 given to me by my GP.
As Jake so rightly pointed out, Homocysteine and Methylmalonic Acid are tests which are helpful in the identification of b12 deficiency, even when the serum b12 is in normal range. My GP does not think these would be helpful and again I have to arrange to have blood taken in London. After taking advice, I test my Homocysteine which is 18.7 umol/L. The laboritory interpretation was "Desired level up to 10umol/L, >15 may indicate increased risk of cardiovascular disease.

My GP now admits I am not absorbing and again is about to start b12 treatment when he receives a letter from the surgeon at the hospital, who removed my gall bladder two weeks ago, that he thinks I should see a haemotologist to identify why he thinks I have developed b12 deficiency. My GP again holds off starting treatment as this would effect tests which the haemotologist will carry out. I see him next week(26th of August).

Well Lisa, you did ask how I found it, and it's hard to explain without unfolding the whole story. I hope that Sod's Law does not have another bite at me, and that I keel over before my tests next week. I'll let you know how it goes.

Good luck to all
Graham





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