Failure to improve: I was diagnosed... - Pernicious Anaemi...

Pernicious Anaemia Society
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Failure to improve

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I was diagnosed with PA last September with a B12 of 50. I had my 6 loading doses & initially felt a little better but that didn’t last. I checked the NICE guidelines & decided to self inject every other day. There has been no improvement & I can hardly walk. My GP is totally disinterested, she says I’m not keeping myself fit! I’m taking all the necessary cofactors. Should I keep injecting as before or do you think I maybe have permanent neurological damage? I’d appreciate any views

34 Replies
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Hi! Sorry I can't help but I was interested in your post as I have trouble walking as well. How would you describe it? I was at the neuro today and he asked me to describe it and I found it very diificult.

I always say I can't walk and people say to me: but you ARE walking. It's as if I have to make a big effort for every step, and have to sit down every few steps...

Anyway, 50 is very low so I would expect you will take quite some time to improve.

Hidden
Hidden
in reply to Sasical

Thanks for your reply. With me, I can walk but every step is a great effort & I’m dragging my feet. Yesterday I fell over, I wasn’t hurt just bruised & I couldn’t get up...a kind lady had to drag me to my feet in the end. I think i’ll continue injecting, can’t do any harm x

Nackapan
Nackapan
in reply to Hidden

Its early days still.

I collapsed October 2018. B12 106

I still cant walk far and always go in w circle so I k ow I can hopefully get back. Every time i try and walk further than 1/2 mile 9 mins. I get ill

When I struggle I call it a stagger walk.

I think I must look drunk.

Other times I can walk quite quickly as long ad I di t stop. I csnt stand on the spot for long.

I feel I'm still making progress but its agonisingly slow and not in a linear line.

I'm now on 2 weekly b12 injections 16 months in.

Didnr k ow how old you are but I think I'd been deficient for a long time

I blamed symptoms creeping up to the menopause.

Keep going I believe onoing improvements can be made .

T C

Sasical
Sasical
in reply to Nackapan

"I still cant walk far and always go in w circle so I k ow I can hopefully get back. Every time i try and walk further than 1/2 mile 9 mins. I get ill

When I struggle I call it a stagger walk.

I think I must look drunk.

Other times I can walk quite quickly as long ad I di t stop. I csnt stand on the spot for long."

OMG Nackapan, you explained exactly what I have but I couldn't think of the word...stagger walk!! That is it!! And I can't stand on the spot for any length of time either.

And some days I have felt as if I walk semi-normal whereas others it feels like I can hardly walk 10 metres.

Hidden
Hidden
in reply to Sasical

Thanks so much for your replies, I’m desperate to recover...I now realise I have to be patient. I’m 70 but have had symptoms of fatigue & depression for many years. I thought I had MS to be honest as I understand some of the symptoms are similar....

Nackapan
Nackapan
in reply to Hidden

We will improve ! I'm 58 . Had too much stress going

on with my life. Mainly family members poorly. I went downhill when the menopause hit. My body just couldnt cope with as much anymore. I pushed too hard for too long. No idea iwas getting b12 deplete . At least 2 opportunities missed by doctors ti do the simple blood test. I had a series of falls

Went to Gp. First time in years. Said so tired ect. Surely not just the menopause. I was told to test more

No bloods taken. Ribs bruised from fall but said I was okay. I think in hindsight I was not thinking clearly at all . I'm usually switched onto my body. Too busy looking after animals and everyone else!

Yes Ms has similar symptoms. Or can do. One of my grown up children labelled with fibromyalgia for years.

She on b12 injections too now.

I think the hardest thing is not to lose your confidence in going for a walk. I will just sit on a wall if need ti pause

Take care. Let's hope we will be running round the block soon😂

Hidden
Hidden
in reply to Nackapan

Hi again, I broke my leg 5 years ago, also retired & lost the family dog, I went downhill rapidly after that. Now my son has a new puppy & I want to walk her more than anything. I do walk her...she does all the running around & I just shuffle along after her 😂

Maybe next year we’ll be running marathons! 🏃‍♀️

sasserp47
sasserp47
in reply to Sasical

I am 67 yo and it was my difficulty walking that caused me to ask my primary doctor to check my B12. After reading the symptoms of B12 def. I said, " That's me! " The results of my serum B12 we none found. My doctor told me he had never had that results before. He ask me to come in that day and start shots. If I were to describe my walking I would say that I have to think about each step or I go off course, and I must go much slower than I used to go. Since getting the B12 shots I can tolerate standing better and I can go up stairs alittle faster. I also developed pins and needles and numbness in my feet about the same time, and was diagnosed with small fiber peripheral neuropathy. I also have spinal stenosis and I think if I did not have that, I could walk much farther. My doctor says the spinal stenosis is not bad enough for surgery so I am thinking about getting a back brace.

Are you self injecting? If not you would probably should and it do you a world of good.

I had trouble walking too when I started injections. I am now 17 months into daily injections and I am walking so much better than I have in a long while.

Hidden
Hidden
in reply to SusieCat

Hi, yes I’m self injecting alternate days x

Hi,

Im no medic but my levels were72 and took considerable time to improve. Ive never got back to the 'old me' though.

What did help was taking daily Folic Acid. I think it somehow helps the body use the b12. Just buy it from Holland and Barrett. I take it daily. There are lots of articals on this forum relating to it.

I wish you continued recovery.

Hidden
Hidden
in reply to lesley12

Hi Lesley12, thanks for you reply. I’m wondering how often do you inject & what dose of folic acid do you take daily?

Hi, I’m so sorry to hear you’re going through this , I got to the stage where I could barely walk when my level was 187, it was then a dr diagnosed me with PA , only for another dr at the same surgery to ‘rubbish’ that opinion and decide there was nothing wrong with me and just leaving me to try on with it. Luckily mine has resolved mostly, I had loading doses then took daily adenocolbalamin and Methylcobalamin after some research , and as long as I take them every single day I remain in a place where I can walk but sometimes still ‘stagger’ and feel like I lose all function in my legs and balance along with many other things. I am not a dr, but I would say it’s entirely possible you have some permanent damage, but as having the injections won’t make that worse, I would continue , our never know, another day, month or year down the line they may help? I would also tell my dr I want a referral to a neurologist and get their opinion, unfortunately, most drs simply do not have any idea how much PA can affect your life, or the inner workings of B12. At least with a neurologist you would hope they are trained enough to at least support if they can’t help make you better. I hope you feel better in the future , I know how frustrating it can be not being in control of your own body because of this . Take care

Hidden
Hidden
in reply to Starseed1983

Thanks Starseed1983

Permanent damage is what I’m afraid of the frustrating thing is I’ve been back to my doctor several times & she just makes me feel as if it’s all my own fault, gives me antidepressants. I won’t go back to her any more so for the moment I’m on my own. My ex husband is a senior doctor so I might ask for his help, but I hate string pulling 😢

This is me too! Almost one year from starting injections after the Dr finally tested my b12 and finding it was 58.

I was very much like Nackapan, had several falls, it was so hard to stay upright and I couldn't walk in a straight line, staggers describes it well!

I'm still not good, if I have to walk far I use a Walker, I can walk shorter distances if I keep going, standing isn't good, it takes a lot of effort to stay upright.

I go to a pilates class when I can, mostly so that I have the core strength to get up if I fall! My balance is terrible and has been for a long time before diagnosis, I am unable to stand on one leg and keep my balance so need support.

I am so much better than I was a year ago when I felt as if I was dying? My healing has slowed right down, I am hopeful it will continue but wish they had tested before as I had every symptom on the list.

Keep going x

Hidden
Hidden
in reply to Showgem

Thanks Showgem, sorry for the short reply but at the moment am feeling very down. I don’t want to be an invalid for the rest of my life x

Showgem
Showgem
in reply to Hidden

It's still very early days, you will improve and enjoy better health, take care x

Hi,

Apologies for the short reply; I'm just about to go out.

I wrote a very detailed reply on another thread on forum. You might find some useful info in it. See link below.

healthunlocked.com/pasoc/po...

I suggest joining and talking to PAS (Pernicious Anaemia Society). Costs about £20 for year's basic membership.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

I am not medically trained.

Cherylclaire
CherylclaireForum Support

Your B12 level is very low indeed. Change your GP if you can rather than trying to educate her when she is already getting so much wrong. What regime are you on : every 2 months ? Every 3 ? Don't wait. B12 deficiency with neurological damage requires every other day injections until no more improvement can be had, and I wouldn't necessarily expect instant improvements. This will take a while, so any review should take that into account. It takes a long time to get this ill and so it is only to be expected.

You can get better than this: better help, better quality of life. You need a supportive GP who is willing to learn with you about what you need and then how to maintain it. We are all different, but a quick reaction to a very low reading is needed here. Your tests should have included folate, ferritin, vitamin D and thyroid levels (at least) as all or any could be affected too. Get a printout of your results- especially if you get a Pernicious Anaemia diagnosis, which would be expected if B12 level this low. Post any results if unsure. My folate and ferritin have never been out of range, but very low in-range seems to be a default setting !

I remember forcing myself to walk short distances locally, mainly because I had also been diagnosed with osteoporosis of the spine and been told the best self-help is to walk. I had to force my legs to make the steps, as if there was a tight rubber band just above knees. It would take hours to get home, mostly crying in frustration. That never happens now.

I was off work for 15 months.

I would say that this sort of damage should be looked at by a neurologist and then monitored. Often a long wait to see one, so GP should have started on this already.

If you have not already done so, I would join the Pernicious Anaemia Society.

Ask the practice if they have had experience of B12 treatment for someone with a level this low and with neurological damage. Ask if they are aware that they are not following the guidelines for this situation and that you are concerned that the damage may well become permanent if not treated correctly.

If this does not at least prompt further discussion regarding your treatment , perhaps suggest they contact the Pernicious Anaemia Society for advice !

In the meantime, if I was you, I would continue your self-help because this is what you should be getting. Try not to get down or waste energy on a single ill-equipped GP.

I am not medically trained, I'm just a teacher who has had to learn a bit about B12.

Hidden
Hidden
in reply to Cherylclaire

Hi, thanks for your reply. Unfortunately I am not at all assertive when it comes to GPs, I feel fairly sure I would get a negative response if I asked at the surgery for a more experienced GP & I know everyone with PA gets the same treatment ie 6 loading doses then 3 monthly injections. As a result I am self injecting every other day & take the necessary cofactors. I will continue with this but I get depressed when there is no sign of improvement. However, as you say my b12 was very low & maybe things will improve in time....thanks

Cherylclaire
CherylclaireForum Support
in reply to Hidden

A kinder GP would be more useful.

Are you not allowed to name the GP you would like to see when you make an appointment ? If you ask around among people locally, you might find a certain name recommended to you more than others.

I'm fairly sure that even if most/ all of the other B12 deficient patients are on a frequency of one every 3 months, they did not all start off with such a low B12 reading, and you may find that this works in your favour. In any case, the treatment guidelines now read "every 2-3 months" and have done now for long enough that someone at your surgery is receiving the 2-month regime.

Yes, I do believe that you have a good chance of improvement, so stick with it.

If you do need help later, please consider joining the Pernicious Anaemia Society. They may well be able to help you.

I'm hoping you get some improvements soon.

CapeMayniac
CapeMayniac
in reply to Hidden

I self-inject daily and decline when I go to every other day. Just fyi.

I'm exactly the same, I hate self Injecting but can't do less than every day, tried every other day around Xmas and ended up walking like I was under water, no power in my body, really scary.

One of my first symptoms was the feeling of being off balance. I noticed that it wasn’t as bad when I went shopping. I would have my handbag on one arm and a shopping bag on the other. I soon realized that it probably helped me with my balance like as if I was walking on a tightrope if that makes sense. A tightrope performer will use a pole for balance. And that’s how I’ve learned to rehab my walk. Even without anything in my arms I hold my arms down to my side and concentrate walking evenly between them . I know it sounds strange but it works for me. With practice my walk looks and feels normal.

Hidden
Hidden
in reply to Freezeframe

Hi, sounds like good advice! I find I’m okay with my shopping trolley but very tired when I get home!

Showgem
Showgem
in reply to Hidden

Hi, did you have tests for other deficiencies? My vit D was very low and that probably made me feel worse

Hi, similar to yourself, I had the loading doses back in September, almost immediately felt better than I’d felt in years, but it didn’t last, and I was eagerly awaiting the next shot a month later. Again felt better, but the effects dwindled much more quickly this time, so I’m guessing I need more frequent doses. I’m currently in my first 3 monthly period, and after a few weeks, all my symptoms had returned, so returned to my GP who said my levels should be high after the loading doses, but if I was feeling down, she could prescribe some happy pills for me, and had I thought of harming myself at all!!!! She did relent a little and sent me for a blood test, which I was informed came back normal.

In desperation I purchased some B12 from a German pharmacy, and I’m currently self injecting roughly fortnightly, next GP injection due 12th February.

I find it hard to believe that my idiot GP would offer me anti depressants rather than a 50p shot of B12!!!

Anyone else had a similar GP experience?

jillc39
jillc39
in reply to Callum4878

yes yes yes a very similar experience with my gp. I was treated as slightly annoying when I presented with my symptoms. the very thought of b12d was almost laughed at. even when the blood result showed a reading of 70 nothing was done. Thank heavens I was told about a neurologist was recommended and she understood the damage already done and discussed the problems of having peripheral neuropathy. Now b12 every two weeks. a victory but I really need it more frequently. I am afraid to rock the gp boat!

Oh yes

. I've been offered many antidepressants. I've even like a robot gone and got them!! Got ho.e and thought why on earth di I need thsrs and not taken them. I was also after 5 weeks if persuasion by Go went on hrt to help my brain function better. Mistake got myself off after 3 weeks. I was an emotion all wreck with the same symptoms.

Aka I 3 neurologists 2 gosh persuaded me to try amitriptyline for headaches/migraines. at a low dose

Again I got the prescription. Initially didnt take it but on a 111 call on the worst migraine event of my life a doctor suggested I take it . It knocked me out and I had a pain free drugged 3 days . Then it didnr suit me. I was disappointed as it helps many others. It just agriviated the symptoms. Got headaches back so tapered off. That was very difficult.

oh poor you nackapan - the consultant prescribed amitriptyline and that has so helped me to have some pain free nights. First it used to be used for depression but has now found to be very helpful with peripheral neuropathy pain,

Hi. Ask the doctor to test your folic acid level, if it's low that could be why you feel your not getting any better. I've had PA for many years & I went through a stage where the injection didn't seem to be helping, I was very tired, found it hard to swallow, needed to sit down often & felt breathless. When I started taking folic acid I felt so much better. It's better to get the tablets from the doctor because they are a higher dose. I hope this helps & I hope you feel better soon. My Daughter (18) is having her loading doses at the moment, it's so unfair.

Hi, I have read through other people's reply so you may have had this advice already, but what is your folate level?? I felt very little improvement from the 8 weekly B12 shots I get until they fixed my folate (which was 2.4). Could you push for tests for a further underlying issue? Good luck!!

Oh how I just love this site - it is so good to hear someone explain just how you feel when you have been struggling for years to tell doctors how you feel and the is the first time I have seen mention of staggering walk and the inability to stand - I was diagnosed 4 years ago by my local hospital Ophthalmology department (of course I had gone there about my eyes and it was their suggestion that I may be B12 d) I had the loading doses and initially every 3 months now 10 weeks and I self inject weekly - but I suppose my point is that really the injections haven't made much difference - I think I have neurological damage as it was at least 15 years before it was picked up and as I am now 80 just accept how I am and enjoy what I can do and am thankful for online shopping - I realise for younger suffers this must be so frustrating - just wish the medical profession would put B12d on their radar.

Hallo Bobbidon. At the beginning of 2017 my B12 was 50 pg-ml and I was diagnosed with peripheral neuropathy. I couldnot walk without walker-cane for 1 year. Since than i already have nearly 500 shots and i feel much better. I inject every other day. It will be a long way, you have to continue injecting 2-3 times a week. I am not a medically trained person, but i have a good experience. I wish you well. Be happy and believe in youself.

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