was diagnosed 2014, left untreated, had all sorts of problems since, was told that it was all in my mind, or due to mental health

[DeficientD]

lost use of legs may2020, was told it was because my feet were in the sun and all sorts of ridiculous suggestions as to what it could be, have been back and forth to doctors with different symptoms since2014, and due to house move have been to 2surgeries, none of which have related any of the symptoms for why I have been back and forth. Also bloods were always satisfactory. How can so many symptoms be missed by so many doctors. Was diagnosed with peripheral neuropathy, which is now permanent and untreatable

[Nackapan]

Sorry to hear thisHave you finally been diagnosed with b12 deficiency or PA. And getting treatment?

When tiu say bloods okay.

Was b12 even on them?

[Sammyo23]

Sorry to hear this. It sucks so much that you go to doctors for help and they don't actually help you.

That you have to go on the internet to learn more about this life ruining problem and then you have to treat yourself through trial and error.

[deniseinmilden]

Don't automatically believe that the peripheral neuropathy is as permanent as they say, any more than you believed them when they said you were OK!

With enough B12 and supporting supplements much of the peripheral neuropathy can be reversed in time, even if it takes years - usually 2 to 5 years at optimal levels.

[GalDriver]

I was diagnosed with secondary progressive multiple sclerosis in 2011 (had undiagnosed symptoms for over 40 years but they got dramatically worse during menopause). I'm vegetarian but didn't learn about B12 deficiency until a year ago. Been self-injecting since then and feel some benefits. Oh, btw, I never had bloods checked. Apparently you can show normal but not absorb the B12 so still be deficient and as the risk of over-dosing is virtually 0 I went for it and no regrets (except that I wish I'd done it sooner)! It seems PA, B12 deficiency and MS have some very similar problems. My walking has worsened, too, I'm now in wheelchair but am hoping that B12 & recumbent cross-trainer machine will give me back some strength & stability. Good luck with your journey.

[Bellabab]

I was under treated for years and started self injecting EOD in February 2020 when my memory, walking, balance, depression etc. had escalated to the point that I felt I was dying and had only a few months to live. Symptoms have improved considerably and I expect to see further improvements - I am prepared to continue for as long as symptoms continue to improve - several more years if needed. Peripheral neuropathy will improve with long term treatment.

[Cherylclaire Forum Support]

I was found to be B12 deficient. I was not responsive to treatment (6 loading injections and then 1 every 3 months) and was getting worse. My MMA was checked at this point and found to be raised, so having ruled out any other causes for this, was given a diagnosis of functional B12 deficiency. I was given 2 injections a week for 6 months and improving - but then got worse again.

In the end, I decided to self inject every other day to see if I could get those improvements stabilised. I was given the opportunity of a phased return to teaching after being off sick for 4 terms -and needed to know for certain that I could function at least on those days.

I was sent to many consultants and most were alarmed by my decision. One however, an ENT consultant, told me that I was doing exactly the right thing, that I clearly still had B12 deficiency (by looking at my tongue- no blood tests required) and that it would take a very long time, that I must carry on and be persistent.

He was right. It took over two years but I have now reduced my injections to every three days and no longer need a daily multivitamins & minerals tablet. I'm not perfect every day, but I now never feel like I'm dying slowly. I now only need about 9/10 hours' sleep instead of 14/15 hours, and never need a nap. I can also walk without having to think about it - for as long as I like.

My vitamin D is on prescription, along now with Raloxifene, because osteoporosis of the spine was also found and did not improve on vitamin D alone.

My tongue ? No change there !

Here are some of the ridiculous comments made by other consultants:

- B12 is carcinogenic

- B12 is toxic

- B12 is highly addictive

- The sense of euphoria felt by self-injecting B12 is well known

- Your air-hunger and memory loss is caused by having been a smoker

- You make a good case for more injections, but I don't know much about B12 deficiency

(this last comment from a neurologist -who at least listened and was honest in response)

For some people, B12 will give immediate results even during initial loading dose administration. For others, it is a long, slow process. Every time doubt crept in for me, I thought of the ENT consultant's kind advice. I also got much advice and support from people here- whenever I needed it, there was always help.

[MariLiz]

My replacement injections of B12 also took a long time for me to feel the benefit. I must have been gradually getting lower and lower, until my balance was awful, I had very bad numbness in my feet and part way up my legs. My brain felt like mush, I couldn’t think straight and was constantly forgetting words mid sentence. I’d become convinced I had a terminal condition.Thank goodness for the GP who listened and organised the correct blood test. Also the GP who understood that one size doesn’t fit all when it came to injection frequency! Without these two amazing people I wouldn’t be writing on here now.

So don’t give up pushing for the treatment you need, and keep hopeful. I’m doing two Yoga classes each week ( on Zoom until recently), I’m also back doing an Art Class. You can get a life back.