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[kerri161074odonnell]

I have had PA for 3 years I collapsed and was rushed to hospital and was diagnosed .I have never been given any info on the illness and was given B12 injections for 5 days. I was them informed I would have an injection every 3 months and take 5mg of folic acid every day for the rest of my life .I take my folic acid and went along every 3 months for injections but found that I was experiencing some severe symptoms . I never had any blood tests for the first 2 years and I never seemed to feel normal .I moved to a new surgery and explained why I had to have b12 and was informed that I only needed it every 5 months ...needless t say I went into meltdown ! They agreed to them every 3 months bit I am suffering with a bad back an numbness in my thigh and foot I am always tired and very unsure what to do ?? I work full time in a pub and it is getting harder and harder to cope sorry this is so long but I need to know where I stand regarding my go x

[Jose651]

Hi kerri161074odonnell,

Sorry to hear you are feeling so awful. B12d is a horrible illness especially when the patient is not being given the correct level of care and medication.

You have come to the right place for help and advice. The more experienced members of PAS will reply to you.

Take care my dear,

Jose651👍

[Lisahelen]

Hi, firstly i would suggest going to gp and asking if they are prepared to increase dosing frequency, if not there are other options available. Or to find another cause for your aches and pains.

Many self inject with whatever form of b12 suits them best, others just use sublingual tablets or even otc b12 tablets in a high dose from health food shops. At the moment im experimenting with b12 patches as my gp refused to acknowledge that i had symptoms which warranted more frequent injections( unfortunately im not alone in this). The patches seem to do the trick for me.

It is a lot of personal trial and error i think to find which works the best for yourself.

I hope you find something which helps soon, being in pain just makes us feel even worse.

[Polaris]

Hi kerri

Here are some links and info which might persuade your GP to treat more frequently and aggressively without delay to prevent your neurological symptoms becoming worse.

Failure to treat adequately and without delay risks permanent neurological damage, as B12 is specific to the myelin surrounding the brain and spinal cord.

Extract from BCSH guidelines:

"The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no improvement.

BMJ latest research document:

cmim.org/pdf2014/funcion.ph...

"Summary:

* Vitamin B12 deficiency is a common but serious condition

* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

[kerri161074odonnell]

Thank you for your kindness I just wish I knew what I was dealing with from the beginning ..nobody tells you what is going to happen or how to deal with it I will go back to my gp with evidence and see what they say ? Maybe a blood test would help but maybe not ? I feel like just giving up and just being in pain and getting on with it x

[pvanderaa in reply to kerri161074odonnell]

Also look into gut issues. See if you have developed intolerances to gluten or dairy (casein protein) which are quite often linked to B12D.

When I lived in the uk, I kept a log book of the severity and number of my symptoms and when they returned relative to the injection. I was able to use this log to convince the GP to first give me injections every 2 months and then monthly. The GP wanted to diagnose me with anxiety disorder but after going through a couple of weeks of that treatment, using the log I was able to show him that it wasn't working and was making things worse.

Without my personal log he only had the NHS General database across the population to compare to and the guidelines which are not totally there yet.

I used the same method when I moved to the USA and now an on weekly cyano-b12 that I self inject and I'm holding the progress of neurological damage at bay and may actually be healing some of the nerve damage that occurred before I was originally diagnosed.