Neurological symptoms

[Bluepuffin]

I have recently been diagnosed with B12 deficiency and started my loading dose this week. Prior to the first injection, I had blood taken to check for PA.

My concern is, my GP has prescribed me two weeks of injections - a total of 6 but I have told her about the pins and needles in my arms, particularly my right arm which seems to have lost some use in it. I've also got balance issues and being treated for depression as well as having problems with concentration - I've also been getting words muddled up.

My question is, are these neurological symptoms, and should I be having more than the two weeks worth of injections?

Thanks in advance and Happy New Year too

[Splodge-1]

Hi, I am in the same situation as you with the same symptoms. I have been told that they are pretty much related to the underlying condition and should start improving given time. Well that's what I have been told. Here's hoping as I have had this for around 2 years.

[Marz]

bcshguidelines.com/document...

Hopefully the first line of the above link will be helpful. Looking at clinical symptoms when interpreting blood test results should perhaps make your GP more aware.

b12deficiency.info/signs-an...

[Gambit62 Administrator]

There seems to be a lot of grey area around what counts as neurological but this list may help - certainly seems to me as if you have some neurological symptoms

b12deficiency.info/signs-an...

I'd go back to your GP and query the treatment - point out that there is a different protocol recommended by NICE if there is neurological involvement, that some of your symptoms are neurological and that you believe that they should be following the protocol for neurological involvement.

All the best

[Bluedragon]

Hi, I'm in same scenario as you, had first two shots of six. My Dr's plan is to then put me on tablets for short while as my IF was negative. Waiting for active 12 results to come bk. I have printed off this: b12d.org/sites/default/file...

And hope to go bk to her and argue. She knows little- she wanted to start straight on tablets cos of IF results and I politely requested the shots. Good luck.

[Hidden]

Hi,

Every one has given you good links, I'll just add one more so you have enough to take with you to show your GP that with neurological involvement you need more aggressive B12 treatment, it being PA (IF positive PA) or B12 def (IF negative PA). The IF antibody test is notoriously unreliable and only conclusive if positive. see:

patient.co.uk/doctor/pernic...

Management[2]

•For patients with no neurological involvement, treatment is with six injections of hydroxocobalamin, 1 mg in 1 mL at intervals of between 2-4 days.

•Subsequently, 1 mg is usually given at intervals of three months. There is as yet no evidence-based guidance as to the optimum regime but the National Institute for Health and Care Excellence (NICE) is considering releasing guidance in due course. It should be remembered that serum B12 is not always an accurate reflection of deficiency at a cellular level.[4] It is perhaps for this reason that some patients become symptomatic if the frequency of their injections is reduced, despite having normal serum B12 levels.

•For patients with neurological involvement, referral to a haematologist is recommended. Initial treatment is with hydroxocobalamin 1 mg on alternate days until there is no further improvement, after which 1 mg should be given every two months for life.[2]

Kind regards,

Marre.

[Polaris]

Hello Bluepuffin

Here are some links you might find helpful. The BMJ - Hunt article particularly has good advice on the management and treatment of B12 def. with neuropathy:

blog.vitasciences.com/categ...

BMJ - Hunt article on B12 def.

cmim.org/pdf2014/function.ph...

ukneqas-haematinics.org.uk/...

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

[Bluepuffin]

Thanks you all for the links and advice - I'm going to discuss it with the nurse on Friday to see if she can get me an appointment with the GP before the two,weeks are up. I know I have nerve involvement in my right arm so I will be fighting my corner especially with all the info you've given to me.

Many thanks again - sure is a great place this

[Paulaw22]

This is standard practice you should have them every three months after that depending on where you live. Sometimes you can have them every six weeks if need be. I have had them six weekly but had a reaction to the preservatives in the injection, so I take a sublingual dose every other day. I too have these issues I have kept all the problems I had pre injection they just stop things getting worse.

[Gambit62 Administrator in reply to Paulaw22]

Not sure where you are based, Paula, but in the UK there are two different protocols recommended by NICE - one for B12d not involving neuro problems - which is 6 shots over 2 weeks followed by every 3 months - and the other for neuro problems - which is loading shots every other day until improvement stops followed by maintenance every 2 months

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

[Poppet11 in reply to Gambit62]

Anybody ever had the every other day shots until symptoms stop improving?

[Paulaw22 in reply to Gambit62]

Both myself and my daughter have PA. She's a staff nurse but you will find in the UK that there is a massive difference in treatment. I have confirmed neurological problems but they will not say anything is relevant regarding B12. My GP won't even go to seminars but sends the surgery phlebotomist! So please don't throw protocols around because my GP didn't even know about the symptoms of b12 he doesn't even think it's serios! There only appears to be one protocol. Test you if you're lucky. Loading dose then once every three months unless your having blood cell or fatigue issues then it's any time between six weeks and twelve weeks. I've even been told to take b12 tabs in between!

[Gambit62 Administrator in reply to Paulaw22]

I'm sorry to hear that you are also struggling with your GP but the fact that a GP chooses not not follow a protocol - for whatever reason - and ignorance has to be the worst reason - doesn't change the fact that the protocol exists. Unless GPs are challenged about why they aren't following protocol then even those who are prepared to learn are going to continue to mistreat patients through ignorance.

It is possible that the changes are quite recent - I was diagnosed in 2012 and only really got to grips with what B12D really is in the later part of 2013 and early 2014 - when the ignorance of my GP forced me to treat myself as even 2 months really isn't much use to me in terms of having a life.

[Paulaw22 in reply to Gambit62]

I was told that I have probably had it since birth as my levels were so low. I had issues after my daughter was born but I stupidly signed myself out of hospital due to having two young children. I have had conventional anaemia since eleven or so which since I've been topping up I have had the best blood levels ever. My blood cells are also enlarged. That's why I now have so many issues and am under the care of a professor who does research into PA and works with the PA society. They are campaigning for better care and awerness of PA in the UK. I had had three major operations before my daughter was found to have it at 21! They kept sending me for blood tests but couldn't find out why my blood was behaving 'strangely' postoperative after a total hysterectomy. My daughter fainted at work and hit her head and they did bloods and found She had severe PA. She works in a local hospital and has worked in three other hospitals and finds people know nothing of PA!