Numbness - please help!

[MrsTuft]

I was diagnosed B12D, surviving on starvation rations from NHS for a few years, got really sick after major Gynae surgery likely due to anathetics / antibiotics, had issues with memory, vision, tinnitus, breathlessness, fatigue, MS hug, loss of balance and numbness/ weakness in legs. Neurologist said all tests clear. Started SI. All symptoms improved quickly except legs which got worse and now my arms are numb too. Strangely it’s much worse when I wake up (not that I sleep well - surgical menopause insomnia!) - I don’t know why that would be? Is this all just reversing out? Could it be anything else? I’m about 8 weeks into EOD and now ED. I cannot explain how anxious panicked and depressed the numbness in my limbs is making me - I’m literally terrified. I wonder if something has been missed or if I’ve had a nervous breakdown but I do feel otherwise sane? If this numbness / weakness in my limbs eased I’d feel okay. I’d be very glad to hear if anyone else has experienced this, any words of wisdom, how to cope through this process, etc. Thank you.

[Clare_oxo]

Hello. I thought I was reading one if my own posts here. I have PA for four years/diagnosed and self inject since covid when the nurse could no longer do it. I live in Spain. I also take extra vitamins and diet try and keep my folate levels up. As tingling and numbness are a sign of folate deficiency. How are your folate levels? My last blood test was all good on that front. My two remaining problems are gut health which I take sauerkraut to help and the protocol here is an endoscopy every two years so I am due one this year so I am not too worried about anything too sinister there. Like you I have tingling in hands and sometimes shins. The insomnia is post men symptom. I too would like any advice on the tingling as like you it does bother me a lot. I know it can be a symptom of PA deficiency but don’t understand why it has recently got worse … could it be anything else… that is what worries me. I know it can be a symptom of under active thyroid which I also have but my levels are checked and that is fine too. Could it be fibromyalgia? Google searches do not help and panic me more. I look forward to reading any thoughts from the lovely members on this forum too. X

[Nackapan in reply to Clare_oxo]

Fibromyalgia is a term used for a group of ongoing symptoms .Including joint inflammation. Pain fatigue ect.

Often when diagnosis with thus other testing stops.

My daughter was diagnosed with this .

It was later found out to be b12 and folate abd megobolastic anaemia.

Then affecting her autonomic function after a spinal disc herniation.

The symptoms switched so no longer termed Fibromyalgia or chronic fatigue.

More tests.

Sounds ad though you are doing well carrying on with frequent b12 injections and keeping s check on everything else.

Unfortunately even after 4 years lingering symptoms can persist.

I believe improvements can still be made.

Have 4 monthly blood tests ?

Check iron ferritin

Magnesium ,folate levels.

Whatever you can get done.

Getting a balance is difficult.

Some tweeks in diet csn help.

The way we eat can. .

Such a minefield as really do not know what nutrients are absorbed from food ,as varies for everyone especially post menopause or in older men with hormonal changes.

I think the hot temperatures are affecting everyone ad we lose more fluid and salts.

I've been craving salty things

Salt and sugar in foods usually avoided but presently want it in a homemade tomato sauce for instance.

Hope you improve

[MrsTuft in reply to Nackapan]

Thank you that's helpful. x

[Clare_oxo in reply to Nackapan]

Thank you so much.

[Hidden in reply to Clare_oxo]

I notice you said you are taking vitamins. Be careful you aren't overdosing on Vitamin B6. I was taking multivitamins every day and sometimes B complex, thinking I might need to balance all the B's because I was having B12 injections. I had no idea B6 could be toxic ... and cause similar symptoms.

[MrsTuft in reply to Hidden]

I’m only taking 7mg B6 a day. And I’ve had low B6 in the past.

[Nackapan]

Hopefully you need just more time for improvements .Keep going with your b1e regime.

I remember questioning if I eas having a nervous breakdown.

I wasn't.

I was told too many times by medics stress , depression.

When your nervous system is upset.

Autonomic system affected.

Shaking

Paranoid .

All symptoms of b12/ folate deficiency

No wonder we question our sanity at times.

What an onslaught.

Then all stirred up further with b12 treatment and healing.

Everything g firing up randomly .

Tc

[MrsTuft in reply to Nackapan]

Thank you. So just keep going then... I appreciate the support/reply. x

[Dilly_blue]

Hello! Can I ask exactly what you mean by numbness / weakness? I have weakness in my hands in the mornings, that eases up with movement, and weakness (or might be stiffness) in my lower legs in the mornings, again which eases up with movement. Is your numbness where you can’t feel touch etc?

In my hands, in the mornings, I seem to lack the strength to pull the duvet up, for example, and I can’t make a tight fist. When I asked a private haematologist about the muscle weakness (eg difficulties writing and buttoning) that is usually listed as a symptom of B12D, I was told that it only tends to occur in the elderly…

So I am really confused about what is going on with me!

[MrsTuft in reply to Dilly_blue]

I mean that my legs are weak and numb. I can do most things with my arms deposited some numbness there too but my legs are like bambi l legs. I don’t see what being elderly has to do with it or it’s a symptom of B12D surely anyone could get it? I’m sorry you’re also suffering. X

[Dilly_blue in reply to MrsTuft]

That sounds terrible, really sorry to hear this. To be honest I suspect not very much is known about the sort of weakness that goes along with B12D - it tends to be listed at the end of a list of symptoms (in books / articles - info etc), but the only detail I have ever seen about it is ‘muscle weakness, eg difficulties buttoning and writing’. And it is definitely not just older people that suffer from it - there are a lot of people in this forum (with a range of ages) who have said they have muscle weakness - so I think the medical professions need to catch up with this issue, as it can really impact upon day to day life.

That is very worrying about your legs. Do you have many falls? Falls can have a really major impact on your long term mobility, so it is really important that your doctors take this seriously. Is there any chance of that, do you think?

I have a very big feeling that the medical professions generally don’t really understand the impact that B12D can have on your health and quality of life (and daily functioning and mobility) - I think that must be why a lot of practices don’t take it seriously and think of it as a ‘quick win’ to help their budgets (by under-treating, or re-testing then refusing further injections). It is complete madness.

Good luck x

[MrsTuft in reply to Dilly_blue]

My Neurologist and GP are taking it seriously as Functional neurological disorder but not as B12, so I self treat. I just hope I improve from how I am now as it’s ghastly. Thank you for your kindness. I feel very low today. X

[Dilly_blue in reply to MrsTuft]

That sounds like you are doing the right thing. From what other members of the forum have said (in other threads) it can take a while to start improving, but it can really improve significantly, if you continue with treatment.

So sorry to hear you feel very low - everyone has those days, sometimes you just have to slip into autopilot and start doing some of the things that you know will help your mood improve.. and be kind to yourself. Take care, and good luck with it all x

[MrsTuft in reply to Dilly_blue]

Thank you Dilly 🥰

[Dilly_blue in reply to MrsTuft]

Ps - are you in the UK? If so, you should definitely ask for a referral to the Expert Patient Programme (you may be able to self-refer yourself, I’m not sure). I highly recommend it - they have lay-led courses (run by volunteers) for people with long term health conditions, and it can really help with how you feel about your health condition. There is a lot about self-management and self-care, and it uses things like problem solving and goal setting, and you are in a group of about 10 others, with other health conditions, so it can be very supportive and can really help to make you feel more in control of things. I did it many years ago (I have had a (different) long term health condition since my early 20s), and I found it completely transformative. X

[Sleepybunny]

Hi,

"got really sick after major Gynae surgery"

Did you have nitrous oxide as part of the anaesthesia/pain relief?

Nitrous oxide turns B12 in the body into a form that the body cannot use.

Nitrous Oxide

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

NICE guidelines Nitrous Oxide ( see side effects section)

bnf.nice.org.uk/drug/nitrou...

PAS can offer support and pass on useful info.

PAS membership is separate to membership of this forum.

You do not need a confirmed diagnosis of PA to join PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

Some forum members have been helped by person who runs B12 Deficiency Info website.

b12deficiency.info/

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

[MrsTuft in reply to Sleepybunny]

They won’t tell me what anaesthetics I had but that was certainly the trigger align with Nitrofurantoin which decimates B12. I’ve read loads and I’m already self treating so what other help do you think I need? I’m keen to know if the numbness since SI is part of reversing out. Thank you.

[Sleepybunny in reply to MrsTuft]

"They won’t tell me what anaesthetics I had"

This info should be in your hospital records so you can make a SAR (Subject Access Request).

Go to hospital website where surgery was done and put Subject Access Request into search box, which should take you to a page explaining the process.

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Accessing Health Records (England)

patients-association.org.uk...

Have you got recent results for folate, iron and Vitamin D as forum members often report deficiencies in these as well as B12.

Full Blood Count might also be useful.

[LouBee73 in reply to Sleepybunny]

I also found out that I have the mthfr gene mutation = so problems with anesthetics/nitrous oxide. I had several ops & they used nitrous oxide on me, and felt worse & worse after each op! That's when I got tested for mthfr - and I found all this out AFTER the fact. I'm in Australia and it's winter and it's been raining, cold & no sun/vit D for ages. The sun just came out so I'm out sitting in it right now, I also decided to go and take some vit D3 drops and some iron inside (before) and omg! I'd been taking the iron before (no change), but after taking the D3 drops today (they have EFA in them too as vit D is fat soluble) & sitting out in the sun, I'm already feeling so much better, I can't believe it! I also developed MDDS I'm the last few years (rocking vertigo and vestibular migraine) and I have Crohn's disease too. I hope that this helped helps some of you! It's awful what we're going through! Sending love & healing to everybody here (sorry if there's any typos) xo

[MrsTuft in reply to LouBee73]

Yes I have MTHFR and COMT gene mutations and it means we can’t process any drugs so well. Our detox pathways are affected. I am coping better since making sure I pass stool more then once a day, drink plenty of water with electrolytes, use my infrared mat, sweat when I can, lymphatic massage etc. I din’t think it’s as bad as some people make out as many people have gene mutations and they don’t always express themselves but it’s definitely a factor. Nitrous oxide kills me too!! It lowers b12. I used to have vestibular migraine - now cured with 600mg magnesium, HRT and addressing my anaemias.

[Sleepybunny in reply to LouBee73]

Sorry to hear about the MDDS.

Do you mean Mal de Debarquement Syndrome?

Link about MDDS (Mal de Debarquement Syndrome)

menieres.org.uk/information...

rarediseases.org/rare-disea...

Some researchers think MDDS is linked to migraine.

I have a migraine related condition called Visual Snow which I think was triggered by a migraine and I think the migraine was triggered by B12 deficiency from exposure to nitrous oxide during labour.

There is no way I would go on a cruise because I'm scared of developing MDDS.

I can manage a short ferry trip.

[LouBee73]

I had frozen shoulders (that's apparently related to thyroid) and now I experience al the symptoms you're suffering with! I would look into your thyroid asap. And make sure they test the whole panel including TSG, rT3, free T3, free T4 and TPOAb, TgAb, TRAb, TSHRab, calcitonin, h-pylori via stool test, selenium, zinc, vitamin D & iron (and of course, thyroid issues often accompanies low B12 levels). Vit D (you need D3+K2) - vit D deficiency also causes: LOW ENERGY, DIZZINESS, TREMORS, BRAIN FOG,BALANCE, GAIT, MUSCLE/STRENGTH PROBLEMS (as well as B12).

FYI:

"There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status".

Good luck - and PLEASE let me know how you go! 😊

Oh, PS - I've been feeling so unwell for about 9-10 years. Progressively getting worse & symptom list growing. No doctor has been able to tell me what's going on - so I was at the end of my tether! I decided to speak to a psychic medium about it (I had spoken to him before and he picked up on such ACCURATE information about my partner etc - who died recently, after I had talked to this man initially/previously), and he told me that I have problems with my thyroid. He told me that it's fluctuating significantly and that that's why whenever I've had it tested so far, that the results have come back 'normal' in the past. He told me that eventually it will be picked up on and that I'll require some treatment. So please get yours checked out on a regular basis ladies, as thyroid disease can creep up on you in the background over decades - without being diagnosed. Usually people give up looking at it/testing it because they think that that's not what's going on 😢

[MrsTuft in reply to LouBee73]

Hi. I regularly check my thyroid and it’s fine. I don’t have H pylori - also stool tested. My vitamin D, taken with K2 is high. I SI B12. I’m sorry for your loss. That’s amazing re the psychic. I had one tell me my uncle would be ill and he was! I do t have frozen shoulder - I’m a yoga teacher and it moves fine - but I do notice a lot of tension there - trains from recent surgery. All the best to you.

[LouBee73 in reply to MrsTuft]

Thank you darlin 🙏❤️ After being told what the medium told me, I've done so much info & discovered that blood tests aren't sensitive enough to pick up on the thyroid issues - and a myriad of other things too (have you read any of the Medical Medium's info?). So my gentle advice to you is to get the doctor to keep checking all your hormone levels properly/thoroughly/regularly. Because as for me, starting to feel really unwell and experiencing all of these symptoms - plus the list growing year after year since before I turned 40 (I'm 49 this year) and the medium telling me that it's my thyroid - even though it's been tested for several times already, that the problem can be sitting there in the background and simply not showing up on blood tests - and it's common that that happens for a lot of women. I think that it's still a good idea to keep getting them tested regularly (especially if they're fluctuating significantly - like I was told mine are) xxx

[MrsTuft in reply to LouBee73]

My menopause doc said that you can be sub clinical low thyroid for years but it’s tricky as then you can’t get medical treatment and would have to support naturally. What do you do to support yours?

[LouBee73 in reply to MrsTuft]

Very true! I only just found out about mine (apparently) fluctuating significantly, so I haven't really being doing much for it. I did read about what the 'Medical Medium' suggests for it though. I've had really good results with a lot of other things (again, recently) via an Indian homeopath in Queensland & his remedies for my fissures, abscess & fistula (mind you, I'm the biggest sceptic, lol!), but I had absolutely nothing to lose so I decided to try it, and I still can't believe how fast his tablets have worked! Those things are almost all healed ^ now instead of/without requiring another surgery for them. It's been a miracle, truly! So I'm waiting for my next delivery of homeopathic remedies for my thyroid imbalances & inflammation. We shall see how these ones go... 😉 x

[LouBee73 in reply to MrsTuft]

*researched and come across so much info & discovered

[MrsTuft]

Homoeopath is a good idea, thank you. I’m not a fan of medical medium as he recommends celery for everything and I’m allergic to it LOL!!

[Stayfocussed]

Time and time again I read about people on here with half their bodies going numb after taking a huge amount of b12....by all means if you're deficient do catch up but after that less is more, you only need 2.4 mcg a day, not injecting 1000 mcg a day

[Pickle500 in reply to Stayfocussed]

I'm afraid that's not true.

Like alot of vitamin deficiencies, recovery is counter-intuitive. You will get worse before you improve, or certainly most people will if they didn't get proper treatment in time.

Masses of B12 is required to reverse the symptoms and that comes in the form of an injection into the bloodstream.

More B12 = more symptoms = more recovery. It's just a matter of patience.

[MrsTuft in reply to Pickle500]

I agree Pickle! Even the NICE / BNF guidelines say to inject 1mg B12 EOD until symptoms improve if neurological. I was surprised by the post above. If that was the case this forum wouldn’t exist!