I was diagnosed with Scoliosis in 1976 aged 15. I had a fusion done in 1979 which was reasonably successful. However, the rod loosened several months later and I had to have it removed a year after the fusion. I was left with scar tissue and constant pain and was put on NSAIDs and acid-suppressants to protect my stomach.
Nothing much changed for about the next ten years. I then married and had my children in the following two years. When my younger child was just eighteen months old, I suddenly had stabbing pains in the sole of my right foot. They were constant for about a week before subsiding a bit. However, I then began to get the same type of pain in other parts of that leg. I assumed it was a deterioration of the Scoliosis and so did the consultants I saw. I was given x-rays and MRI scans and, although there was evidence of calcification and prolapsed discs, this did not in itself explain the pain I was experiencing.
Six months later, I experienced a TIA (mini-stroke) and it was discovered that my BP was high and I was put on medication for it. From then on, I never felt well. The pain, which I now knew was nerve pain, was getting worse in intensity and frequency and was very difficult to control. I was using a cocktail of NSAIDs, analgesics and Gabapentin to try to keep it under control. I then began to lose grip in the sole of my foot and the muscles at the back of my leg withered. I then experienced bowel problems, an inability to control the emptying of my bowel, and along with that, slight stress incontinence and frequent bladder infections (UTIs).
I was also diagnosed with allergic rhinitus and was constantly congested, requiring nasal surgery. I also had frequent random allergic reactions and unexplained random infections. I was constantly exhausted - not a need to sleep but a complete lack of energy and a heaviness in all my limbs. I started stumbling and losing the ability to concentrate. I slept (or rather didn't sleep) but had to lie down for most of the day. Muscles in my legs would constantly flutter or jerk and I began getting excruciating foot cramps. By this time, I'd also had an operation to straighten and fuse my big toe as it had turned in under the others due to numbness in my foot and leg.
My stomach was constantly upset. I always felt full and bloated and uncomfortable and brought up copious amounts of gas. Then, I couldn't even stand to prepare a family meal and had to keep taking in gasps of air. By last September (2008) my bladder ceased to function at all and I had to start self-catheterising. I also had to self-evacuate my bowel as it had packed up too. By now, I also had to use a cane and could only walk yards before needing to sit down and rest.
Just as I thought I couldn't go on much longer and felt close to death, I noticed someone mention Pernicious Anaemia on the internet. Curiosity alone made me look up what it was and I was astounded to see all my symptoms listed there. My GP agreed to check me for it but the result came back normal. Despite this, and because I still had all the symptoms, he offered me trial injections. Within hours of the first one, I noticed an improvement. That night, for the first time in months, I had no pain at all. Within the week, my BP had returned to normal and I was able to stop the medication. By the following week, my energy levels were beginning to recover and I had stopped stumbling.
Five days after the last B12 'loading dose' my symptoms began to return. I returned to my doctor who allowed me more injections. Nine months later, I'm still on an injection every three days else my symptoms return and have been taught how to self-inject. I can't believe how much better I am and feel lucky to be alive.
However, I haven't responded to treatment as expected and the normal maintenance dose for PA is one injection every three months, or every two months if you have neurological involvement which I clearly have. Even although it is now clear that many people can't manage on a three-monthly injection, very few need as frequent treatment as me. I began to try and find out why. My problem doesn't seem to be one of malabsorption but of something going wrong at a later stage of the process. While researching this, I came across the condition Homocystinuria. I noticed that two of the symptoms are Scoliosis and toothcrowding (which I also have). Those who inherited only one defective gene could remain free of symptoms until adulthood but were at more risk of folate and B12 deficiencies (I also need to take a permanent high dose of folic acid).
I had assumed that my B12 deficiency was caused by my long term use of acid-suppressants as these are known to cause B12 deficiency by preventing the stomach from absorbing B12 from food due to insufficient acid necessary for this function. Added to that was the fact that NSAIDs also have a detrimental effect on B12 and the antibiotic I had to take permanently for repeated UTIs which are an inevitable result of self-catheterisation.
I now wonder whether my Scoliosis and Folate/B12 deficiencies are the result of mild Homocystinuria. In this conection, I would be very interested to know how many Scoliosis sufferers have gone on to develop folate/B12 deficiency. Also, for those who perhaps haven't got the length of being diagnosed, do you recognise yourself from the following list of folate/B12 deficiency symptoms:
Inability to concentrate
Balance problems (particularly in the dark)
Need to look at the ground when walking
Bowel and bladder problems (incontinence/bladder retention or diarrhoea or slow transit constipation)
Tingling and numbness in arms and legs
Electric -shock type pains in particularly legs
Brittle or ridged nails
Prematurely grey hair
Paranoia or mild depression
Sore tongue (beefy and red)
Suppressed immune system
Restless legs and muscle jerking or spasms
Need to keep gasping in air (like involuntary sighing)
Enlarged liver (right-hand-side neck/shoulder pain)
High blood pressure or racing heart/palpitations
I asked a similar question on the Pernicious Anaemia website forum and, of those who voted in a small poll, 33% had Scoliosis and B12 deficiency. This seems to me to be considerably more than would be expected.
I would really appreciate if as many of you as possible could respond and let me know if either you, or someone else you know with Scoliosis, has gone on to develop folate/B12 deficiency.
Please also let me know if you recognise yourself from the above list of symptoms,
Thanks very much