Memory Problems, tingling hands and loss of sensation in finger tips and toes

[gillsie]

I was ill for years with most of the classic symptoms of PA ( stomach gastritis, heart palpitations, tingling , balance issues,muscle weakness and fatigue, poor memory , irritability, hair loss, etc etc). My GP just said it was all stress and depression as my husband had been ill for a long time and life was stressful. I knew this was rubbish having always been one of life's copers! After years on omeprazole I saw a newspaper article which alerted me to the fact that it can impair B12 absorption. I asked for a test and my level was only 75!!!!!!! No wonder I felt ill. I tested positive for IF antibodies and also parietal cell antibodies and the last gastroscopy showed atrophic gastritis. I had full blown auto immune PA. I went private for an MRI scan and some neuro test and was told all was fine and offered amyltryptaline!! (Do doctors think antidepressants are a cure all! I resist taking these knowing that B12 is what I need.) After 2 years of battling I now get monthly injections of hydroxycobalamin and feel much better but my memory is still dreadful and I still get pins and needles in my hands and feet and continually drop things. Is this likely to be permanent? Has any one else had a level as low as mine? I also still need to supplement with oral sprays and under the tongue lozenges as I lead a physically active and demanding life and even monthly jabs run out. I live in fear that the NHS will reduce my injection frequency.

[wedgewood]

Dear Gillsie,

I do feel for you . I suspect that monthly injections are not enough.You may have to resort to self-injecting----I did. I also have burning numb feet which my doctor says are not neurological symptoms! I have heard that Methylcobamalin injections could possibly help the feet. I am going to see an Ecological doctor in October, who I know has Methylcobamalin. My B12 levels were not as low as yours, but who knows,as the test that is done is often hopelessly inaccurate . I wish you all the best.

[gillsie in reply to wedgewood]

Thanks. I would be interested to know how you get on with the methylcobalamin and if you can cope self injecting. All the best.

[wedgewood in reply to gillsie]

I now cope very well self-injecting,and I am 78 . I will keep PAS informed about methylcobamalin injections/infusions when I have had chance to judge.

[Sukiwarrior in reply to wedgewood]

Hello.

Can you tell me how you got on with your Ecological doctor and where is he based and the cost.

Thanks.

[wedgewood in reply to Sukiwarrior]

Yes I got on well with the Ecological doctor in Bristol(there are 2 there) Dr. Nicola Hembry .She is getting some Methylcobalamin injections for me. Cost of consultation --£225 for 90 minutes. You can get a shorter consultation of 1 hour, for less. But there is a lot of ground to cover. If you google Ecological doctors you will be able to find one nearest to you.(they are thin on the ground) I was able to find the cost from her web-site, so it didn't come as a shock. Hope that this helps.

[Gambit62 Administrator]

Sorry to hear that you have had such a tough time and that things continue to be tough.

I was told I was B12 deficient and sent home with loading jabs after a fall at home left me with a broken ankle that needed pinning. I don't know what my levels were and I'm still trying to get hold of the tests but not really having much success with the hospital ... ask specific questions and you just get photocopies of records so if the test results weren't printed out - which wasn't the case - you don't get the answer and have to start again. Had loads of tests related to osteoporosis but absolutely nobody thought that may be the fact that I'd had a fall could have been sign of balance problems due to B12. GP focused on leg and stress and anxiety and nothing on B12 - was down to a locum to tell me that i'd really need to continue with injections - was put on 2 months - but still found 2 months far to long and if I got a cold then it would all deteriorate very rapidly. Went to see my GP and he just wanted to prescribe an anti-depressant so walked out and apologised for wasting his time. Was so mad and felt so at mercy of NHS that decided to take matters in to my own hands. I was using a nasal spray which helped a bit so I really upped the dosage on that and within a couple of weeks things had improved from struggling to walk to being quite happy perching at the top of a ladder to prune my grape-vine. I also self-inject when I feel a virus going on ... but probably the big difference for me is that I've suffered from depression for years and since I really upped the dose I'd have to say that the depression has gone (was always resistant to taking anti-depressants). I can still get quite stressed (few days before my period) but it feels like stress not depression so here is me feeling that the depression probably was down to the B12 and if only I'd known earlier ...

I don't think doctors think that ADs are a cure all but I do think that the way targets are set and rewarded makes them more likely to stop at depression and anxiety = must prescribe ADs and lack of real awareness of the full range of symptoms of B12 deficiency is a real problem. It probably doesn't help - realised this at the last appointment with GP (back in May) that the standard test that they use to diagnose depression could almost equally be used to diagnose a lot of B12 deficiency symptoms. Frightening. I know that my GP is really caring and really did want to do the best for me but he was so closed down on the whole idea that it could have anything to do with B12 and I really wasn't in a place because of the B12D where I could really argue back logically.

[gillsie in reply to Gambit62]

I know what you mean. I had the same problem. I try hard not to go back to the gp anymore it seems pointless when they have such fixed ideas. I know they are busy but they should have an obligation to research the conditions that they treat patients for. There are enough papers and research out there highlighting the importance of b12 which is used in every cell in the body and its metabolic pathways are complex but vital. I ought to have been referred having such a low level and neuro symptoms but never was. Mind you plenty of the consultants are not upto date either. It makes you despair of the system.

[Hidden]

Hi gillsie,

My serum B12 was on diagnosis: serum B12 86 ng/L = 63 pmol/L . I do not test positive for antibodies but have an abnormal terminal ileum, I have been on B12 treatment since 2001, 2006 I learnt to self inject and now add to my NHS two monthly every 2 weeks with self bought B12. Its made all the difference I do not have tingling feet any more, can keep my head going and the fog is mostly gone. I also was declared folate def after 5 years of B12 treatment and now buy my own folic acid that I add to my once ever 2 week jab, besides talking a multi vitamin and it all seems to work well. The thing is once you have learnt to self inject, know where to get what then that fear of what will happen if they take B12 away from me is gone.

So make sure you are not now folate def, learn to self inject (remind the GP how much it will save the NHS, offer to come in once a year to have blood test to make sure all is well, is what I highly recommend you do...if you can!

Kind regards,

Marre.

[gillsie]

Hi marre thanks for replying. Who taught you to self inject, waS it your own nhs surgery? I asked at my local pharmacy if you could buy injectable b12 but it wasnot available. It seems in europe you canbuy it but I rarely travel abroad.

sometimes the stress over worrying about getting your jabs can contribute to the problems of deficiency.

why are gps so ignorant about the issues?

thanks -it helps to talk and share problems. Gillsie

[Hidden in reply to gillsie]

My Surgery taught me, it did take time to convince the GP (nurses were helpful). I get my B12 abroad (SPAIN) but also on prescription (2 monthly). You can get a lot on the internet, many do! Marre.