Pernicious Anaemia Society

B12 And Nerves to legs

My mother 76 was diagnosed very late with B12 Pernicios Anemia around 2008 she has Neurolgical symptoms so 2009 started on B12 injections every 2 months but before the doctor was giving injections every 3 mths so i contacted the GP and got my mother the injections every 2 months .They missed her Anemia for long time.She had breast cancer which was treated and went into remission she had pains quite recently radiating around her ribs front and back ,i thought it could be shingles without the rash as it burnt to touch her skin even putting on clothes .The GP sent her for Ct Scan and it was ok no cancer in breast so the diagnosis eventually was pluerisy without the water.

Couple of years ago had Knee replacement and quite recently over a couple of mouths started walking with shuffle to balance herself now slowly worse ,The GP gave water tablets which i thought was pountless She has now lost movement in legs ,bladder and bowels leg spasm in 1week.She waited for anAmbulance for 7 hrs and as they said if blood involved more serious .I think legs not working IS SERIOUS Now she is In spine ward in a Hospital MRI ok small abnomalies on spine could it be temporary from Infection or but Doctor’s not saying much just said MRI looks ok had many other tests.Anyone now anything about this could it be caused by B12 and pernicious anemia would like some advice please.

18 Replies
oldestnewest

Did your mothers symptoms correlate in anyway to her shots - if they got better for a bit with the shots and then started to get worse then it may be that more B12 might help - though the scan showing up anomalies may imply that it is something else - though it could just mean that the scans are difficult to interpret because something got in the way.

Have you mentioned B12? sorry if you have and got looked at as if you were a madperson.

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Hi Gambit62

thank you for your reply it was odd she used to be very heavy footed and then gradually walks with a gait or more of a shuffle and now cant walk at all ,has feeling in her toes but cant move them but says she can only lift her knees up slightly maybe just the right from what she says.Her husband is in his 80’s and find it all too much to cope with and is looking into NHS social service help.

I did get her to mention B12 injections

She has been taking PPI lansoprazole low dose but i does say it can cause bone density and make them fragile as she has rheumatoid artritis.She has been 3 hrs having scans i know MRI is laying down for 90 mins hard for anyone.

Thanks for your generous help.

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as your mother has injections the PPIs aren't going to be a problem B12 wise as they only affect absorption in the gut and your mother is no longer using the gut to get her B12.

It does sound like it is some sort of neuropathy going on but there are a lot of things that will cause neuropathy.

It also doesn't sound as if the shots were interacting with the symptoms.

Hope you get some answers soon.

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Hi Gambit62 thank you for your support throughout the year.

Best wishes Happy New Year

to you.

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Hi Advice1

It would be good to have your Mother's Folate level checked as this and the B12 she is having injected help her iron to make red blood cells and to function properly in the body.

I'm not medically trained but have had P.A. for 45 years.

I wish you both well.

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Hello clivealive

thank for this information much appreciated for your explanation.

and your kind words

Happy New Year.

Reply

Hi,

B12 deficiency can lead to spinal problems if a person is untreated or under treated.

I'd suggest might be worth joining and talking to PAS soon, as hopefully they can pass on useful info.

PAS

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone so messages can be left.

PAS news item about Neurological Consequences of PA.

pernicious-anaemia-society....

Blog post from martyn Hooper's blog about PA that mentions SACD, sub acute combined degeneration of the spinal cord

martynhooper.com/2010/09/21...

PAS article about SACD, available to PAS members

pernicious-anaemia-society.... See Page 2 of articles.

Spinal issues are mentioned in these B12 books I found useful

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

"started on B12 injections every 2 months but before the doctor was giving injections every 3 mths"

UK b12 treatment

1) BNF British National Formulary Chapter 9 Section 1.2

bnf.nice.org.uk/drug/hydrox...

2) BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

For B12 deficiency without neuro sympotms

6 B12 loading jabs over 2 weeks then a jab every 3 months

For B12 deficiency with neuro symptoms

A B12 loading jab every other day for as long as symptoms continue to get better (this could mean loading jabs for weeks even months) then a jab every 2 months.

You mention your mum is now on a jab every 2 months due to neuro symptoms but how many loading doses was she given?

I wondered if GP has considered giving loading doses according to neurological B12 treatment regime.

NICE link below mentions that when a person with B12 deficiency has neuro symptoms, advice should be sought from a haematologist.

cks.nice.org.uk/anaemia-b12...

Has your mother seen a haematologist recently or has GP written to a haematologist?

With neuro symptoms, has your mother ever seen a neurologist?

B12 blogs

May be relevant stories on these blogs, certainly some about elderly people with PA or suspected PA.

Martyn Hooper's blog

martynhooper.com/timeline/#...|december_2017

B12 Deficiency Info blog

b12deficiency.info/blog/

Unhappy with treatment?

Link about writing letters to GPs about b12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

CAB NHS Complaints

citizensadvice.org.uk/health/

HDA patient care trust

hdapatientcaretrust.com/

UK charity that offers free second opinions on medical diagnoses and medical treatment.

"Doctor’s not saying much "

Your mother is entitled to ask for copies of her medical records from GP surgery and hospital. Can be difficult to get hold of UK hospital records. Can involve form filling and a visit to hospital records office. With your mother's written permission, I think other people can ask for records on her behalf.

Access to medical records/blood test results (England)

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

nhs.uk/chq/Pages/2635.aspx?...

Some people have powers of attorney on health and welfare matters for their elderly relatives.

gov.uk/lasting-power-attorn...

Elderly patients

I think the elderly can sometime struggle to be listened to. I am pleased to hear your mother has your support. B12 deficiency is not always as well understood as it could be by some GPs and specialists so in my opinion it pays to do B12 some homework.

More b12 info on pinned posts in this forum

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Hi sleepybunny

my mother had the usual loading doses which the GP’s do 2 weeks every other day

thank you for the amazing amount of interesting quality info links ,and thanks for

your time which i really appreciate most generous of you.

Best wishes.

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Your mother was diagnosed with PA and neurological symptoms in 2008 but does not appear to have had adequate treatment from that moment on. She should have had injections of B12 every other day until the neurological symptoms disappeared or ceased improving and regular adequate injections to prevent further damage.

It sounds to me as if there has been gross medical mismanagement from the outset.

At her age there may well other pathologies involved which should be investigated thoroughly but I would strongly suspect she has subacute combined degeneration of the spinal cord which is now unlikely to benefit from B12 injections, although other symptoms may improve and even more may be prevented.

Oher co existing pathology must be treated properly so as not to compound her problems

Personally I would indicate to the consultant in charge of her care that you are very distressed as you believe she could well have sub acute combined degeneration of the spinal cord which could and should have been prevented with the correct treatment of her B12 deficiency ever since its diagnosis in 2008.

Do not allow them to fail her again in reaching the correct diagnosis/diagnoses now and treating her according to current best practice.

If I had been responsible for her initial and continuing management as a doctor I would be very fearful of the letter from the GMC calling my medical competence into question.

I am so sorry to hear your story and send my most sincere good wishes to you and of course to your mother.

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Thank you very much for taking time to reply Dewbuk and for all your kind advice which i will look into all yourvery good points most grateful to you

Best wishes to you too.

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Hi again,

My personal preference in past has been to put concerns in a polite, brief as possible letter. My understanding is that in UK, letters to GPs are filed with a person's medical notes so are a record of issues raised. I always keep copies of any letters I write.

The link in my post above about writing letters has some very useful info.

If your mum lacks capacity to act on her own behalf then it may be worth the family considering if getting power of attorney is appropriate.

If she has capacity to act on her own behalf then I think she can still give written signed formal permission for someone else to intervene on her behalf.

PAS (Pernicious Anaemia Society)can sometimes intervene on behalf of PAS members who are struggling to get correct treatment. PAS membership costs £20 for a year.

There are stories about how PAS have supported people on Martyn Hooper's blog.

If there is any possibility of formal complaints then it may be worth getting a complete copy of medical records (£50 maximum) before procedure starts. I have heard stories of people finding that medical letters and other notes are missing from their medical files.

Has your mum considered changing to a different GP surgery? I would add that changing GP surgery is no guarantee of better treatment.

nhs.uk/chq/Pages/1088.aspx

NHS choices publishes reviews of GP surgeries. If you click on name of surgery you should be able to find reviews.

nhs.uk/Service-Search/GP/Lo...

May be worth joining a local PAS support group if there is one close by, as they can be a useful source of info about helpful GPs etc.

pernicious-anaemia-society....

Possible Sources of Support/Info

1) CAB (Citizens Advice Bureau)

2) PAS

3) HDA patient care trust

4) Local MP may be interested in those who are struggling to get treatment they are entitled to.

parliament.uk/mps-lords-and...

5) NHS England Complaints

england.nhs.uk/contact-us/c...

6) Age UK

ageuk.org.uk/information-ad...

7) CCGs

nhs.uk/servicedirectories/p...

8) Advocacy

voiceability.org/support-fo...

seap.org.uk/services/nhs-co...

pohwer.net/nhs-complaints-a...

UK b12 documents.

I'd suggest reading all of these

BMJ B12 article

bmj.com/content/349/bmj.g5226

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Also I found summary of mainly UK B12 documents in third pinned post very useful .

I have met GPs who have some misconceptions about b12 deficiency.

Misconceptions about B12 Deficiency

stichtingb12tekort.nl/weten...

English language article from Dutch B12 website.

"She has been taking PPI lansoprazole low dose"

Risk Factors for PA and B12 Deficiency

PPIs can be a risk factor for B12 deficiency.

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Why was she given PPIs?

The symptoms of high stomach acid and low stomach acid are very similar. Some people on forum have had high stomach acid diagnosed when the problem was low stomach acid.

Low stomach acid

drmyhill.co.uk/wiki/hypochl...

Acid Reflux

nhs.uk/conditions/heartburn...

Nitrous Oxide

Did she have nitrous oxide during surgery over last few years?

Link about effect of nitrous oxide on B12 levels.

gov.uk/drug-safety-update/n...

I am not medically trained.

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Sorry for the delay in replying sleepybunny thank you very much for going to so much effort to give out this very good information,My mother has been found to have Cancer ,some tumors on her spine which cannot be operated on ,she is on PPI 15mg Lansoprazole one aday low dose for her stomach lining due to taking Clopidogrel anti-platelet treatment after a stroke over 2 yrs ago but as Gambit62 says it cannot interfere with B12 injections like my mother has but maybe Magnesium.Also yes she has had nitrous oxide for her for Knee replacement.

Thanks for your generous time and help.

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Hi,

I am sorry to hear about your mum. I hope she gets the best care possible now.

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Hi sleepybunny ,thanks for your kind wishes

for my mother ,i am grateful for your hard work in you always providing very good info and always good links too members with your valuable contributions to healthunlocked.

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Your mother has symptoms I had, with walking difficulty and bladder problems, before I began B12 injections. In addition to nerve damage to the spine, pernicious anemia can cause peripheral nerve damage, so nerves that come out of the spine can be damaged, affecting walking, bladder, even bowel. There are medical articles that state peripheral nerve damage happens with pernicious anemia; I'm sorry I don't have the citations to give you. Guidelines say injections should be given immediately with signs of neurological damage. She has those signs. She needs loading doses of B12 until the signs of nerve damage go away. There is no good reason to withhold these injections from her! They cannot justify withholding them. Please let us know your mother receives the care she needs.

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Thank you bquoss for your kind advice much appreciated to you.

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If your B12 is low or your having other B12 related symptoms it will always help to take B12 as it’s a lot to do with nerves.

You say it’s 1 injection every 2 months, although it’s unlikely gp will give you more than that. I think it would help if you purchase B12 yourself and go on weekly injections for a few months (3-4), without telling your doc....if it improves symptoms that will be great, if not you gave it a try and you can simply stop without any harm.

That’s only 4 injections per month and 16 over 4 months.

You can purchase 2x10 1ml ampules online from a reputable German company called Versandapo de.

It’s worth a try as you can’t overdose and B12 is water based and body gets rid of excess through urine and it doesn’t matter how high your numbers go in blood if injecting.

Wishing your mother best of health.

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Thank you Ryaan for your kind advice which is very is Much appreciated and also for your kind wishes to my mother.

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