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Hi, I'm sure my questions have already been asked so I apologise in advance.
In early 2018, after almost 2 years of increasing symptoms such as brain fog, fatigue, interrupted sleep, decreased sense of smell and taste, and burning feet accompanied with a sensation of wearing stockings to the knee and long gloves, I was told my B12 serum levels were 220 pmol/L and B12 active levels 41 pmol/L.
My GP is proactive and commenced 1000 mcg IM methyl shots immediately with a schedule of 1 shot every 3 weeks for 9 weeks; then once a month. 4-5 months after my first shot I felt no real improvement had occurred and asked to have shots every 2 weeks, which my GP agreed to. This continued for appx 6 weeks when I got sick of attending the surgery and requested they show me how to administer the shots myself, which they did. Thankfully I'm in Australia so can purchase ampules over the counter at a chemist, and can get free injecting equipment through a health organisation. I self administered every 10 days for 8 weeks. By then my B12 levels were well over 1000 pmol/L and have remained there. I subsequently stopped having the shots as I appear to be maintaining levels adequately. I was also taking 5000mcg of Methyl B12 sublingual tabs daily along with a B complex, fish oil, zinc and joint pain supplements (dodgy knees). I continue to supplement regularly although not to such high levels.
In April 2018 I asked my doctor to review previous blood tests to check whether my B12 had ever been tested before as my symptoms had progressed considerably - it turns out it had been in Dec 2016 when I first went to get my issue of numb toes checked out. My levels back then were 198 pmol/L and 39 pmol/L for serum and active forms respectively. These results were never followed up by my GP at the time and I was completely unaware of them until April 2018 . At the time they had concerns it may have been MS as my sister suffers from the disease.
I have also had my children tested as I was concerned that this may have been a dietary issue. My youngest two tested in the low to mid 300's. I supplement them occasionally as a result as there is a chance they're not getting enough from their food.
Over the last 3-4 weeks I've noticed a significant return of the burning feet and stockinged legs/arms sensation, particularly of a night time. I live in a tropical area of Australia and have noticed this seems to occur when the weather heats up. The brain fog is almost non-existent and my sleeping patterns have improved significantly. My memory however still has some gaping holes in it and I continue to struggle with retention of information.
I've also recently discovered I'm massively deficient in Vit D, which surprised me as I live in a place with almost constant sunshine (not as great as it sounds I might add!). It seems the Slip/Slop/Slap skin cancer campaigns have really paid off and we are a nation of increasingly Vit D deficient people.
I have had 2 MRI's that were clear of MS, stroke, tumour, any form of demyelation disorder, spinal cord compression, and cauda equina. I saw two different neuro's who tried to convince me it was anxiety and wanted to treat me with anti depressants and then suggested I visit a psychologist. I went to see a psychologist who rejected the anxiety theory (as had I) but they suggested it could be fibromyalgia. My GP rejected this suggestion and frankly I'm dubious myself. I've had STI checks; urine protein checks; autoimmune checks for lupus, Sjogren syndrome, RA etc; diabetes; iron studies; MMA (after supplementation unfortunately); thyroid function; coeliac disease; intrinsic factor and routine bloods/chemistry checks. With the exception of a slightly abnormal liver function (ALT) test, all have been clear and normal. I'm not pre-menopausal. I am visiting my Dr again soon for follow up tests to check B12 & Vit D levels. I'm now also seriously considering environmental factors such as adult onset allergies, or some sort of contamination. The last I doubt is an issue as my children don't appear to be affected.
So finally to my question(s) - from the past experience of other B12 low/deficient patients:
- should I continue B12 shots on a (minimum) fortnightly basis given that the burning sensation has significantly increased recently after calming down for a period of time, and my memory is still shot?
- Can anyone provide an average time frame for a significant resolution of symptoms?
- Is there anything obvious that's been missed and I should have investigated?
Hopefully someone is still reading this....
Many thanks in advance!
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