After nearly 3 months of going in and out of the doctors with the following symptoms I started to wonder if I was B12 deficient:
-numbness/weakness in legs and one arm
-sore/stiff knee joints
They ran a B12 test after I displayed macrocytosis on a FBC. The doctor told me my my B12 was normal, and said I just had a virus. He did however instruct me to have another blood test to ensure my blood results went back to 'normal'. After a few more weeks, with the symptoms worsening, I decided to get copies of my blood test results. They eventually handed them over and I had a B12 level of 243 (which I know now is low enough to be deficient in spite of what doctor said) and high folate levels of 13.4 (I understand you can have high folate if your active B12 levels are low as it is essentially redundant!). I was tested for lots of things-thyroid, parasites, iron etc...and everything came back negative. I'm guessing B12 is looking a possible culprit?
To cut a long story short, no less than four GPs refused to give me B12 injections because of my B12 test results. I pleaded, brought printed-off information from the NHS website to consultations. They even agreed with my self-diagnosis but all said they couldn't "justify" injections or that I was not "deficient enough" in spite of my symptoms. I am on my third doctor's certificate because the faintness and weakness is so bad I cannot get up and work. I am more or less housebound.
I have been taking 5000mcg sublinguals (2 x day) for nearly 2 weeks now. Last week the faintness receded a little but a few days ago it came back as bad as before-and with killer headaches this time. Are headaches at the start of treatment normal? Am I being too impatient to expect any change just yet?
I have arranged a couple of private B12 injections (5000mcg of Methylcobalamin) next week and will perhaps have two more the week after. I cannot afford to pay for any more private injections after this so in the meantime I was going to purchase my own B12 injections and self-inject. Does anybody have any advice on purchasing injections (recommended pharmacies, needle size etc) and dose and frequency plans they tried which worked for them?
NHS slammed the door in my face and I'm desperately fumbling around in the dark here so any comments, advice, suggestions, shared experiences are very welcome!