"Neuropathy/Pernicious Anaemia"

Diagnosed with PA in 2000, when neuropathy of the right foot was noted.  Received standard loading doses of Hydroxycobalamin and thereafter x1 jab every 3 months, until about 5/6 years ago when it was increased to x1 jab every 2 months.  Fast forward to September 2022 when neuropathy in right foot extended to whole of the sole, and began in the left heel, plus tingling in lower limbs and fingertips and across forehead.  Due to not knowing where my right foot was (proprioception shot to pieces), I had a fall in December 2022 resulting in considerable bruising and badly sprained left ankle.  

Attended my GP surgery in January to voice my concerns.  Fobbed off with -it's your age-etc.,  Firmly denied this and asked for a referral to a neurologist which was able to do as have Private Healthcare cover.  Bloods through surgery showed B12 level as 'sky high' and nearly lost my jabs at surgery, despite me producing diagnosis letter that B12 jabs are for life.  Referred under NHS for nerve conduction test but when this was carried out the referring 'clinician' ( a physician's associate(!!), had stated the problem was in the left hand rather than the right foot, so waste of my time, and that of the hospital etc.  At the neurologist's appt in early May 2023, it was confirmed that the PA had caused short fibre neuropathy.  No other conditions were identified by various blood tests and MRI and CT scan.  Back to surgery and asked if I could received B12 jabs every other day in accordance with NICE guidelines where neuropathy presents.  This was refused.  I have written citing NICE guidelines on at least two occasions and provided hard copies of the NICE guidelines and yet refused every time.  GP surgery cites that it is just a vitamin and you can buy it cheaply if you want to take more. 

Completely overlooking the fact that I receive injections as I do not make the intrinsic factor to enable my body to process the B12 I take in naturally in my diet.  Surgery is staffed by a pool of locums so you never see anyone more than twice, and spend a good 8 minutes of your 10 minute appointment giving a potted history of why you are there in the first place.  Badly let down by a surgery that has no conception of the condition of Pernicious Anaemia and that treatment should be governed by patient symptoms and NOT levels in blood tests.  If I adhere to the surgery schedule of receiving x2 B12 jab every 4 weeks, this will be to the detriment of my neuropathy becoming worse, possibly leading to a fall that might well result in a broken hip and at 73 I do not wish to experience that.  As a result of being a long-term member of the PA Society in Bridgend I have, with support, gone down the route of self-injecting sub-cutaneously EOD (according to NICE guidelines), and will continue to do so in order to preserve my health and hopefully heal the myelin sheath to the many nerves that are damaged and forestall further deterioration.  Sad that support of a health condition is so poorly administered by my surgery.