Update: Any advice? Continued proble... - Pernicious Anaemi...

Pernicious Anaemia Society

32,623 members23,985 posts

Update: Any advice? Continued problems and Symptoms

tattoogirl profile image
5 Replies

Hey, Please read this bit i wrote recently: healthunlocked.com/pasoc/po...

Basically my legs have got better in terms of walking, i can walk faster but then some days im really really slow and still get exhausted easily with walking. I managed to walk 10 mins continusly without aid and I was ok. But then 2 days later I was totally wrecked and fatigued. I had to use a crutch to go about tescos and then rest the rest of the day.

One of the things that has developed the last month for me is that I have developed constant pins and needles in my arms and hands. My wrists and hands become in alot of pain the more i use them and then take a day or two to recover. A few of my fingers on my right hand have begin to cramp inwards abit, and i notice this when i lift something or when im eating or when im just doing nothing! I find it hard to chop vegetables and sometimes cut my dinner. Has Anyone with low b12 and folic acid had this problem as i have yet to come across it?

I had a nerve conductory test done and it came back clear, so im waiting on seeing the neurologist again but i just dont know what to say or do. He doesnt know about my arm and hand issues so thats something i will discuss, but is it just a waiting game?

thanks

Written by
tattoogirl profile image
tattoogirl
To view profiles and participate in discussions please or .
Read more about...
5 Replies
Sleepybunny profile image
Sleepybunny

Hi,

I wondered if you were on the UK neurological treatment regime for B12 deficiency.

In UK, people with B12 deficiency with neuro symptoms eg tinnitus, tingling, pins and needles, memory issues, balance problems are supposed to have a b12 loading jab every other day for as long as symptoms continue to get better (this could mean weeks even months of loading jabs) then it's a jab every 2 months.

UK B12 treatment

Info can be found in

1) BSH Cobalamin and Folate Guidelines, about a quarter through guidelines.

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

2) BNF British National Formulary Chapter 9 Section 1.2

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

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

B12 deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Link about writing letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

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

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.

"A few of my fingers on my right hand have begin to cramp inwards abit,"

I used to wake up with hands like claws before I started B12, the claw effect wore off during the day.

I am not medically trained just someone who has struggled to get a diagnosis.

Gambit62 profile image
Gambit62Administrator

could you update on exactly what treatment you have and are receiving.

people vary a lot in how they respond to B12 and how frequently then really need loading and maintenance doses - it may be that you need more frequent injections.

at this point reviewing serum b12 results isn't going to be much use - you need to go by symptoms.

Also do you know what the position was with your folate levels - although you need to start B12 therapy before folate treatment the timescale should only be a day or so and without folate your body isn't able to ue B12 for everything that it needs because the two are used together in some key processes.

tattoogirl profile image
tattoogirl in reply toGambit62

Hi

At the minute all I am receiving is taking folic acid 5mg one daily. I dont know the position of my foliate levels but i do know that it was 3.5

Note that I started taking the folic acid about 2 months before i even had any symptoms at all, the reason being was that i was feeling unwell for a few months and the doctor did bloods and it came up low so they said to treat it just incase. But as i said this was before any symptoms of b12 or anything was even there.

About 6 weeks ago I had my loading injections, so twice a week for 3 weeks, and now ive to wait till the 3 month period. I have started taking b12 supplement just yesterday which i got from a proper health store. After reading a few things on here i also got some folate from the health store too.

Tomorrow night I go to see the neurulogist for a review. I have made a list of symptoms and new symptoms. Im going to ask about getting more b12 injections. I dont know if you will get to read this but is there anything i should ask when im there?

Another thing is pain medication, im taking gapenpentin at the minute and i dont think its doing much, but i am in alot of pain with my wrists and hands and i cant take co codamol or any kind of drug like that as of the antidepressants im on.

Thank you for reading and replying!

Gambit62 profile image
Gambit62Administrator in reply totattoogirl

I am perplexed by the B12 symptoms seeming to come on very quickly. The way the body stores B12 means that a deficiency tends to develop very slowly over years and even decades. This does mean that you often aren't conscious that things are symptoms of B12 because they creep up on you so slowly and they get put down to other things - like general aging.

Have you looked at the full list of symptoms and then thought about everything that is relevant regardless of when it started?

pernicious-anaemia-society....

Are you sure that there really isn't something else going on.

Things that you could explore are:

a) the possibility that there isn't (just) a problem with B12 absorption but is there a problem with processing B12 in your cells

b) there have been a couple of recorded cases where treating a folate deficiency before addressing a B12 deficiency has precipitated SADC - but if your nerve conduction tests are coming back okay that would seem to rule this out completely.

c) functional B12 deficiency - raised serum B12 levels can sometimes cause a reaction that stops B12 getting from blood to cells - leaving you deficient at the cell level - so the injections could have kicked off this reaction. It does seem that a very effective way of treating it is to keep B12 levels very high so the reaction doesn't get all of it and enough gets through.

tattoogirl profile image
tattoogirl in reply toGambit62

Hi

Thanks for your reply. Over the past ten years ive had problems with tiredness but i always put it down to medication. I have had mental health problems for about 13 years (anxiety, depression). I have also had stomach problems on and off, it goes through spells. IBS symptoms. Ive had problems with concentration and on and off nauseua.

Im not sure if anything else is going on. I do worry because both my mum and my sister have fibromygia so maye it could be that but we dont know yet. At the minute hes treating it as b12 and folic acid but my doctor (not consultant) is not convinved.

I am really hoping that the neurologist has some answers or investigations but something tells me its just a waiting game. I am paying privately for all this, as the waiting list in the UK is terrible.

Not what you're looking for?

You may also like...

Folic acid and Sudden onset of symptoms

Hi Everyone - I’m new to the group and have just been diagnosed with PA. My b12 blood test was 311...
Andrianna profile image

New to this, b12 and folic acid low, neuroligical problems

Hi Guys Im new to this forum as over the past 10 weeks I have went from a normal girl to one that...
tattoogirl profile image

Agoraphobia after starting injections

I started cyanocobalamin injections on August 4 2018, almost right away I developed agoraphobia. I...

Could Multi vitamins containing folic acid be the cause of increased neurological problems?

Hi I've had fatigue for a long time now and recently found out that I had low serum b12 back in...
Steap profile image

Thank you and advice on ordering my SI kit. So nervous about it!

Hello everybody, You have all been great supporting me since September, when I heard the radio...
VickyB12 profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.