Difficulty walking: Hello, I have... - Pernicious Anaemi...

Pernicious Anaemia Society
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Difficulty walking

Bobbidon
Bobbidon

Hello, I have mentioned this before... I was diagnosed with PA 6 months ago b12 50. I have very severe problems with walking & have been self injecting every other day as suggested by the NICE guidelines with no improvement. Checked the NICE guidelines again today & there’s no mention of aggressive treatment for those with neurological symptoms. So should I reduce my injections now? I feel fine in myself but just can’t walk properly. I am pushing for an MRI scan with no luck as things are at the moment.

52 Replies
oldestnewest

I was diagnosed in Jan 2010 after having my daughter, when my blood count was so low I turned green! My GP at the time said 'she'd seen more colour in a corpse'. Me being me turned and replied really? After a week in hospital, fluids, blood and 4 b12 injections I was allowed home. Two years later my injections were stopped. After nurmous requests for them to be reinstated,I ended up back in hospital, this time for 5 weeks! 5years on I still have trouble walking, some days is worse than others. It gets worse when my b12 injection is due or if I've over done things. Hang on in there, life does get better

Bobbidon
Bobbidon
in reply to Penni

Thanks, I am afraid I may have permanent damage to my spinal cord.

BadHare
BadHare
in reply to Bobbidon

I have a prolapsed disc & sciatica from ski lift accidents, & subsequently lost sensation in my lateral left leg which causes poor balance & regular falls. I only started SI two years ago, & recently more frequently 4/5 days apart. I’ve noticed an improvement in as much as I can feel pain where my leg & ankle were previously dead.

It might be worth continuing with your frequent injections whilst you’re waiting for your MRI. The diagnosis might flag up something that can be fixed, & in the meantime you could have a breakthrough. Hope so! 🤗

Bobbidon
Bobbidon
in reply to BadHare

Thanks for your positive reply.

BadHare
BadHare
in reply to Bobbidon

Good luck! 🤗

Is it your balance that is the problem with you walking?

Bobbidon
Bobbidon
in reply to beginner1

Hi, my balance isn’t that good but it’s mainly extreme weakness. I can only walk a short distance then I’m really struggling.

beginner1
beginner1
in reply to Bobbidon

Oh dear, I am sorry.

My balance has not improved but I have no weakness.

I hope you can get it sorted soon.

Bobbidon
Bobbidon
in reply to beginner1

Thanks

Hi,

I'm sorry to read about your walking difficulties.

Are you getting any B12 treatment from NHS?

How long have you been on every other day B12 injections?

I resorted to self treatment a few years ago as could not get NHS treatment at that time.

I needed many weeks of regular injections to see any improvement in my neuro symptoms;

I am still seeing small improvements after several years.

"I am pushing for an MRI scan "

Have you been referred to a neurologist?

I used to request referrals to specialists along with supporting evidence eg symptoms lists, test results, extracts from UK articles/documents in letters to GP.

If you are concerned about possible damage to your spine, perhaps you can ask to be assessed for SACD.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

There is a PAS article about SACD,, sub acute combined degeneration of the spinal cord, on PAS website (access to PAS members only).

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

Blog post from Martyn Hooper's blog, mentions SACD

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

Are you a PAS member?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

PAS helpline may be affected by impact of pandemic.

PAS support groups in UK

pernicious-anaemia-society....

Although PAS support meetings have been cancelled during pandemic, if you join PAS you can access contact details for your nearest local group.

I wrote a detailed reply on another forum thread with links to B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

More B12 info in pinned posts on this forum.

I am not medically trained.

I am having 3 monthly b12 injections from my GP but I really don’t get on with her so I will be changing my GP as soon as corona is over. I’ve been self injecting for about 2 months after reading the NICE guidelines, now I see this has changed. I think I’ve had PA for many years & have been to my doctor several times with fatigue, depression & insomnia & lately weakness in my legs. My GP gave me anti depressants & told me to keep fit! As an afterthought she ran blood tests. I’m convinced I have SACD.

Thanks for your reply

Hi,

"I am having 3 monthly b12 injections from my GP"

That's so wrong if you have neuro symptoms...my understanding is that you should be on injections every 2 months.

I'm willing to bet you only had 6 loading injections when treatment started as well.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

NICE CKS

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

Link about writing letter to GP if under treated for B12 deficiency with neuro symptoms..

b12deficiency.info/b12-writ...

"I’m convinced I have SACD."

I suggest you mention your concern over possible SACD in any letter to GP and request in writing that you are referred to aneurologist. Of course with current situation, there'll be a long wait .

Can you see a neurologist privately although no guarantee of a better experience?

Yes I did, but I’m doing my own thing now. I was just confused because there is no mention of extra injections for neurological symptoms in the NICE guidelines now & was wondering if things had changed.

No chance I’m afraid of a private consultation.

nano2
nano2
in reply to Bobbidon

I’m so sorry to hear you’ve got such a lgnorant and stupid GP. They should have referred you to Neurologist who would send you for MRI and EMG/NCS test as your So bad with your walking. You need to give your GP a copy of the guidelines.

I'm still very weak and csnt walk far. Akso with balance issues . I walk in a tight circle to make sure I can get back. Sine days I csnt even stand for long.

I'm making very slow improvements. I would keep up the b12. Get your brain mri.

I was told b12 deficiency affect that part of the brain.

Cawthorne pysio exercises help me.

Bobbidon
Bobbidon
in reply to Nackapan

Thanks for your advice, I’m just really frustrated a the moment, being isolated

The BNF says that those with neurological problems should have injections every other day until no further improvement. It certainly sounds as if you have no further improvement.

You really need to see a neurologist. There are several things that might cause your symptoms and B12 is just one.

Bobbidon
Bobbidon
in reply to fbirder

Thanks, yes I know this really...I’ve just had a bad day & can’t move things forward at the moment

I hope a better day tomorrow. Those days are truly horrid.

My life actually isnt that different with the isolation. Infact more people text me suddenly remembering i exist.

Try some cawthorne exercises. Start slowly and try and relax. Which I know is one of the hardest things to do when in pain . T c

Bobbidon
Bobbidon
in reply to Nackapan

Yes, the isolation is killing me... I live by myself but usually spend time with my granddaughter & I also walk my son’s dog but that has stopped now. I’ll try some Cawthorne exercises, I’m not in pain fortunately, just totally weak, yes you take care too.

Nackapan
Nackapan
in reply to Bobbidon

You need exercise .

Pity you cant walk the dog still.

I often think I need a dog as I go out for thses walks in circles alone

. Glad you not in pain.

Can you speak to your grandchild on ? Face time or whatever it's called

Bobbidon
Bobbidon
in reply to Nackapan

I would’ve thought it would be fine for me to walk the dog but he says no & I don’t want an argument. My granddaughter is too young for FB but see sends me pictures on Instagram & I’ve had the occasional text. I’m trying to do exercises but I’m basically lazy 🙄

Recommendations may have changed but frequent injections are your hope to walk again

Thanks, I was worried I was over doing it, but I’ll keep up with the jabs.

fbirder
fbirder
in reply to Bobbidon

Does your GP know about you problems walking? Has he ruled out obvious alternatives? I would be trying very hard to get a phone consultation. It can take six months to get a referral.

Bobbidon
Bobbidon
in reply to fbirder

Yes she does know but takes no interest, this why I’ve been going it alone..we really do not get on, this is why I’ll be changing my doctor as soon as I can. I know all the things I should be doing but I find it very difficult. I am not assertive, I’m a retired nurse & I know how doctors feel about patients who tell them what to do. My ex husband was CMO 2 years ago & even he can’t or won’t do anything to help as he’s no longer practicing. So I’m on my own for the time being & I have to accept that.

End of story for now.

There are two NICE guidelines the ‘ official’ ones and the BNF guidelines. In the first there’s no mention of treatment for neurological symptoms in the second which takes its recommendations from the British Society of Haematologists the recommendation is for neurological symptoms to be treated with every other day injections until no further improvement. Our doctors are treating my husband who has been diagnosed with pernicious anaemia with every other day injections. He was taught to self inject at home and has been for eighteen months. Although he has improved it’s very slow progress. If you have been so poorly it will take time you need to be patient in the knowledge you will get better. I am not medically trained and I wish you well.

fbirder
fbirder
in reply to DelMegJJ

There are no NICE guidelines. There is a NICE CKS (Clinical Knowledge Summary). There is no onus on medics to follow the advice in a CKS.

The NICE CKS does, indeed, have a long section on treatment cks.nice.org.uk/anaemia-b12... where the say...

For people with neurological involvement

Seek urgent specialist advice from a haematologist.

Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:

Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.

The BNF is the official guidelines. It lists how a drug is licensed to be used. Nobody knows where the BNF got the current guidelines, but it wasn’t from the BSH. Tracey Witty has tried to find who came up with the current protocols and for sent in a circular tour of various buck-passing bodies.

So it is the BNF that people should point doctors towards regarding official guidelines for treatment.

Bobbidon
Bobbidon
in reply to fbirder

Okay, thanks

Bobbidon
Bobbidon
in reply to DelMegJJ

Thanks, I can see I haven’t been doing my homework properly! I’ve decided I’ll carry on injecting every other day for the time being...I think I’m too impatient!

fbirder
fbirder
in reply to Bobbidon

To be honest, if there is no improvement at all after six months then I doubt that it will help to carry on. You really need to try and see a neurologist. Of course, that's not going to be easy in the current climate.

Still it can't hurt to carry on with the jabs while you wait.

Bobbidon
Bobbidon
in reply to fbirder

Thanks, as soon as this is over that’s my first priority.

I was diagnosed with B12 of 58 just over a year ago and had great difficulty walking because of balance, shortness of breath, weakness and numb feet,

I am still far from being normal but have very slowly improved. If I'm walking far (which isn't often as I don't have the energy) I use a Walker and a stick for shorter walks.

I an still hoping for further improvement as even a doctor said the nerves to the feet can take two years to repair.

I am currently self injecting weekly but wish I had every other day injections for a longer time at the beginning of treatment so would say to continue with these frequent injections.

It would have taken us a very long time to get so low so it will take us some time to recover so don't lose hope.

Bobbidon
Bobbidon
in reply to Showgem

Thanks Showgem, must admit I have been beginning to lose hope. While I’ve been in isolation I’ve started doing some gentle exercises which seem to make me feel a bit stronger.

Showgem
Showgem
in reply to Bobbidon

I’ve learned little and often works best, if I attempt too much I crash and then feel downhearted.

It’s ’s been a hard lesson to learn as normally I am a person that pushes myself to do more.

I also have asthma, fibromyalgia and osteoporosis which is why it took so long to get a P.A. diagnosis as for a long time I was putting my now obvious symptoms down to other things.

Now I try to concentrate on what I can do now I’ve slowly improved, I was doing a Pilates class before the lockdown and need to remember to keep up the exercises while I’m at home.

Hope you too see improvement soon. X

Bobbidon
Bobbidon
in reply to Showgem

That’s like me. I suffer with depression & put my weakness & difficulty walking down to that....as did my doctor. I will try to be more positive & accept that my recovery will be slow.

Thanks for your reply

Sorry if I've missed it, but are you also taking the supplement Methylfolate

Bobbidon
Bobbidon
in reply to Marymary7

Hi, I take folic acid, low dose iron, vitamin c, vitamin d

Why don't you try Methyfolate it may be superior according to some research in some cases. Worth a read up. Anything is worth a try and optimising to the best researched supplements and dosages is worth it or may be? Lots of vitamin supplements research available on here. SeasideSusie on Thyroid site has brilliant research and resources and I know it's on here too if you read up.

I think my brother has Subacute Combined Degeneration of the spinal cord but can't help him now as it's effected his mind sadly. I think his may be mixed up with Multiple sclerosis just to confuse the issue.

Bobbidon
Bobbidon
in reply to Marymary7

Thanks for that information, I’ll try methylfolate

Marymary7
Marymary7
in reply to Bobbidon

My brother had some Methyfolate in the form of drops, expensive but I felt they were the best. He was like you with his walking. I used to inject him with B12 Methylcobalamin as his one hand didn't work. He felt that worked better than Hydroxocobalamin jabs.

We took lots of brilliant advice from this site and also spoke to Dr. Chandy (retired) It was probably many years too late to turn my brother around, it effected his brain in a bad way probably the MS. Sadly he has progressed to a wheelchair.

Bobbidon
Bobbidon
in reply to Marymary7

Thanks, so sorry to hear about your brother. Haven’t had time to search for the methylfolate yet but I certainly will do.

Marymary7
Marymary7
in reply to Bobbidon

Also have you had your thyroid checked.

Bobbindon, I have written this before but want to share again. When I was first diagnosed my gait was the biggest problem, I felt like the ground was moving below me or I had bad vertigo...can't explain it any other way. I was sure I had a brain tumor or ms. All I can say, is that it very very gradually gets less and less. It is not there any more (2 yr) on, although I can on rarer occasions still feel a very mild version but more like I might feel slightly wobbly in my head, but it doesn't stop me working etc.

Hope this reassures you. Keep well x

Thanks for your reply, it’s very encouraging. How often do you inject.

Bobbidon, I inject every four weeks. I also take folic acid 5mg every second day, as prescribed by GP. A higher dose than most but my GP has not changed that following a blood test. My GP prescribes b12 for 8 weekly injections but I but from Germanay so I can inject 4 weekly. I feel reasonably well mainly, odd brain fog a as they call it, tired at times and still odd tingling here and there, mainly toes. Take good care

I have just checked NICE and they still say:-

"Pernicious anaemia and other macrocytic anaemias with neurological involvement. By intramuscular injection. For Adult

Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months."

My ability to walk returned completely a couple of weeks into every other day IM injections. I have been taking folic acid as well as this is needed to ensure B12 works - 500 microgram a day is NICE recommended unless folate deficiency also diagnosed and then a much bigger dose will be prescribed. Not that some medication can cause the walking difficulty - the antidepressant Duloxetine gave me the same walking problems. You might want to check out any medication you are taking.

Bobbidon
Bobbidon
in reply to Bellabab

Ah well, I must’ve been looking at the wrong page!

I think you have to go with what helps your symptoms. I take 5mg of folic acid every second, a much larger does than most. That was the initial dose I was first given when first diagnosed, except at that time it was daily. I spoke to my GP re recommended doses etc, so she did a blood test and my levels folic levels were fine, so she wants to leave it as it is. Just thought I would say .

Insomnia and depression often linked to hypothyroidism. Very common for autoimmune thyroid disease to be an issue with low B12/PA

Have you had thyroid tested at all?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels, thyroid and thyroid antibodies

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Bobbidon
Bobbidon
in reply to SlowDragon

My thyroid is fine thanks. Mild depression is something I’ve had to live with since I was a teenager.

Problems with mobility are so difficult to face. I'm so sorry. Did you by any chance have sodium pentothol in the time before this happened? It is often used to help with pain in dental offices and A&E. It depletes any reserves of B12 your body has built up from regular injections. I had problems walking soon a after oral surgery a few years ago. It took six months of injections every two weeks before I got back to normal. I did not figure out the cause until it was over, so I did not know to ask for more frequent injections.

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