mri scan now with enlarged white space have 2 month’s injections

[nmayow]

hi I continuously feel drained and sleep all the r time kesterday drunk 1.8 litres of coffee to keep me awake. memory is so shit excuse my language that I can’t even I stand some movies I watch I have to ask my daughter what has happened. Found out in first lockdown I had B12 deficiency since then I can’t remember things about my children when young always repeating myself 6-7 times a day . Have bad mood swings. Tingling and numbness in arms and legs feet . Tripping over stuff the list goes on . Had an mri in December nothing shows up had another mri in June now a large space pops up got to see a neurologist again . Been diagnosed with functional neurological disorder, obstructive sleep apnea as well as B12 I feel like anything else goes wrong is it worth living because i don’t feel alive

[Technoid]

like many here it seems like you need a lot more frequent injections. If your practice does not agree you may need to look into self-injecting.

[Sleepybunny]

Hi,

Welcome to the forum.

How often are you getting B12 injections?

Did you get loading injections when your B12 treatment started?

BNF link below outlines two patterns of treatment for B12 deficiency in UK

1) for those without neuro symptoms

2) for those WITH neuro symptoms

BNF Hydroxocobalamin

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

I think there is a good chance you will see some improvement if you are getting enough B12.

Some other links about PA and B12 deficiency that may be useful.

Some links I post may have details that could be upsetting. I'm not medically trained.

Link about "What to do next" if B12 deficiency suspected or recently diagnosed

b12deficiency.info/what-to-...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in link above is about being under treated for B12 deficiency with neuro symptoms present.

If you have a PA diagnosis or suspect you have PA, worth joining and talking to PAS who can offer support and pass on useful info.

PAS membership is separate to membership of this forum.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Testing for PA

pernicious-anaemia-society....

PAS website has lots of useful leaflets/articles and a page for health professionals that your GP may find interesting.

Two useful B12 books

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

Martyn Hooper founded PAS (Pernicious Anaemia Society).

BNF treatment in above book is out of date. See BNF hydroxocobalamin link.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

"Been diagnosed with functional neurological disorder"

A diagnosis of FND (functional neurological disorder) is not uncommon on this forum.

While some people may have both FND and B12 deficiency, I suspect that some including myself get this label because some doctors don't understand the sheer range of neurological symptoms B12 deficiency can lead to.

B12 deficiency can be misdiagnosed as other conditions.

b12deficiency.info/misdiagn...

Misconceptions (wrong ideas) about B12 deficiency

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

UK blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

UK B12 documents

NHS article about B12 deficiency (simply written)

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines (detailed and aimed at health professionals)

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

NICE CKS (Clinical Knowledge Summary) - B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

I can post links to threads where I left very detailed replies with lots of B12 deficiency info.

Just let me know if you'd like me to post them.

[nmayow in reply to Sleepybunny]

Hi yes I did get the loading dosages then went to every 3 months then it went to 2 months but for the last 8 months I’ve been telling them that when it hits the 5 week I’m done and I go back to being drained sleeping etc . This time round I’ve had my B12 jab on the 29th september and today I’ve been so tired that if I have my phone in my hand I will drop it because I’m asleep. I do have a CPAP machine for sleep apnea

[Nackapan in reply to nmayow]

push for a trial of 4 weekly b12 injections.

At present I've s prescription for 2 weekly.

They can prescribe more if in the best interest of their patient

otherwise consider buying and inject inbetween your prescription ones.

if nothing else found to treat

vit D ,Folate ,iron, ect

thyroid been checked you've nothing to lose.

At the start after loading j hit week 5 and coukdnt cope.

was supposed to wait 12 weeks

went back on every other day for 6 months then started to go longer

Alot of people need more

[Dilly_blue in reply to nmayow]

How much are you using your CPAP machine? I know they say try for four hours or so a night, but I find that my apnoea is worse in the latter half of the night, so if I only used it for four hours then it wouldn’t be stopping the worst drops (I have rem-related sleep apnoea). I find I can tolerate the CPAP more if I use good ear plugs (I use ear pluggerz, purple silicone ones with rows of flaps - they stay very secure in your ear), so this reduces the noise level; also an close fitting eye mask (that has a small flap over the bridge of the nose (this stops any of the excess air being blown into your eyes)).

Also I use a saline nasal spray before bed to ensure that my nasal passages are as clear as possible, otherwise breathing with the CPAP can feel very awkward.

I think if you can get more good quality sleep then you will feel able to cope with things much better - because, frankly, trying to get adequate B12 is a bit of a battle! Good luck with it all, and I hope things improve for you soon… Db

[nmayow in reply to Dilly_blue]

hi I am struggling with the CPAP Machine i can only use it for 2-3 hours at a time . I do sleepwalk as I took all my daughter’s favourite sweets don’t worry she’s 24 not a little child and I used to cut her hair at night she didn’t mind the haircuts I did really nice styles for her 😂. I also have severe panic attacks because I stopped breathing so much but since using the machine my breathing has improved. I must admit it is the latter that I have problems as that is when I tend to rip the mask off .

[jade_s in reply to nmayow]

I highly recommend the cpaptalk forum. I've been on cpap since 2007 and they really helped me in the beginning! Really an excellent and helpful forum. cpaptalk.com/CPAP-Sleep-Apn...

[Sleepybunny in reply to nmayow]

Hi again.

"I did get the loading dosages "

How many loading injections did you have?

BNF suggests 6 loading injections over 2 weeks for people without neuro symptoms.

BNF suggests a b12 loading injection every other day for as long as symptoms continue to improve for those with neurological symptoms.

There is no set time limit as to how long the every other day loading injections can continue for those with neuro symptoms. Could be weeks or even months of them.

If you only had 6 loading injections, I suggest you query with GP in a letter whether you were on the right treatment pattern. You mention a variety of neurological symptoms such as tingling, numbness, tripping over.

See Point 1 in letter writing link in my other reply.

See BNF hydroxocobalamin link and look for treatment pattern for those with neurological involvement. GP can find BNF info online or in Chapter 9 section 1.2 of their BNF book.

Vital to get adequate treatment as inadequate treatment increases the risk of developing permanent neurological damage.

Does your GP have a list of all your symptoms, especially every neuro symptom and definitely any affecting your spinal area.

I found it upsetting to look through symptoms lists so you may want to have someone supportive with you if you look through the lists below.

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

cks.nice.org.uk/topics/anae...

b12-institute.nl/en/symptom... (from B12 Institute Netherlands)

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

Many UK forum members on the forum resort to treating themselves if NHS treatment is not enough for them.

Some get extra injections from private GPs, some get B12 ampoules from European pharmacies and self inject. It's possible to get B12 injections from some UK beauty salons although personally I'm wary of this. Some people supplement with high dose oral b12 tablets, nasal B12 drops etc between injections.

There is currently a petition to get injectable B12 available over the counter in UK.

change.org/p/dr-june-raine-...

Tracey Witty of B12 Deficiency Info has been campaigning on this issue for 8 years.

b12deficiency.info/eight-lo...

[nmayow in reply to Sleepybunny]

hi yes I had 6 loading dosages . The worst part is 2 months ago I trod on a pin for decoration on a bed it went into my heal about a cm deep and I didn’t know I had stood on it . I pulled it out didn’t hurt or bleed but the next day I really felt it . Went and had a tetanus as it was rusty . Everyone couldn’t believe what I had done. My daughter thinks I have permanent nerve damage . as I could remember anything for 6 months my memory was deleted completely. I was bleeding heavily for 6 months that I changed drs and this dr went B12 straight away. Had to start from scratch on how to do basic things so yeah that’s what happened in first lockdown

[Sleepybunny in reply to nmayow]

Have a good look at Point 1 in this letter writing link.

b12deficiency.info/writing-...

"The worst part is 2 months ago I trod on a pin for decoration on a bed it went into my heal about a cm deep and I didn’t know"

Maybe keep a page of brief notes on incidents like these as this may help the neurologist.

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 films, 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...

[VellBlue]

NICE guidelines state that people with neurological symptoms of B12 deficiency should be on every other day injections until symptoms stop improving.

cks.nice.org.uk/topics/anae...

Given you find your symptoms improve when you have an injection and then deteriorate, that is strong evidence you need more frequent injections.

If the doctors won't give it, source your own. Life will be worth living again.

[jade_s]

I was very similar to you 6 years ago. Daily injections have fixed me but it took a long time. My memory was also zero and interestingly I'll now get random old memories popping into my head. I'm relieved they're still there... i guess the pathways are still healing, even after all this time!

Functional neurological disorder (FND) is basically the CFS/ME or fibromyalgia of the B12 world. It's a 'disorder' of exclusion, not any definitive disease. As others have said, you will benefit from more frequent injections.

[nmayow in reply to jade_s]

I’ve tried to buy some of the ampules from Versandapo ut they haven’t got the ones I need and don’t know where to get anymore

[jade_s in reply to nmayow]

You're in the UK, correct?

Versandapo keeps running out of Panpharma (previously Rotexmedica), so you can sign up to receive an email alert when they are back in stock. And there are other places you can order from, normally wedgewood keeps a list and posts it periodically but I couldn't find back the latest ones... I think she is PM'ing the info these days. Wedgewood could you please help with a list of injectable B12 sources for the UK Thank you!