Feeling a little lonely with PA neurological symptoms misunderstood

[RoseFlowerDew]

I just wanted to pop in and say how lonely I feel with misunderstood neurological symptoms of auto-immune B12 deficiency.

I’ve been having worse than normal neurological symptoms lately such as very bad pins&needles/burning in my feet and legs, tremors up my spine and even a slight return of something like nystagmus which I notice more now that I am trying learn art. Thankfully I had my B12 injection yesterday and suddenly the background feeling of vertigo and sight issues has gone, and the pins&needles are less bad. I feel clear headed and calm! It’s a wonderful break from the norm but then I expressed how well I felt to a close one only to be told rather surprisingly I should not become addicted to B12! I have no idea where that came from but know that my doctors are equally ill informed despite me handing in the information PAS supplies. (I have even had cardiologists categorically state that it is impossible for PA to affect the heart....my heart symptoms didn’t improve until my injections for other reasons was changed to every 2 months). I can only say that I am relieved that the PAS has videos up from the conferences and I told my close one of the research, guidelines being reviewed and cyanide poisoning treatment involves high doses of B12. But I still told that it’s a pseudo treatment and just happens to make me feel better. Because that echoes my doctors approach to my situation I feel particularly lonely today. Such a struggle to be understood and taken seriously. Left to my own devices to advocate for my health to cloth-eared health care workers and loved ones. If I had a doctor say this is serious and needs attention then there would be a chance my family would begin to understand ‘because the doctor says so’ but if I self refer to other doctors I am seen as doing the wrong thing...i.e. I’m not falling in line.

[VellBlue]

"Such a struggle to be understood and taken seriously. Left to my own devices to advocate for my health to cloth-eared health care workers..."

Think this will resonate with a lot of us. Certainly does me.

Take care and start self injecting if that is what you need.

X X X X X

[Hidden]

Your not alone , and dont be afraid of being judge by a gp who thinks b12 injections are just a placebo effect,We are here because we are all in the same boat, little understanding and empathy.

NOCEBO affect comes to mind.

[fbirder]

Have you seen a neurologist? If not, demand a referral. B12 neuropathy will cause things that are impossible to fake.

Are you on any drugs for the neuropathy?

[RoseFlowerDew in reply to fbirder]

Hi fbirder,No, not seen a neurologist because my first symptoms in 2013 were disordered speech, perceptions and psychosis so pushed into mental health for assessment who failed to perform differential diagnosis and didn’t spot PA. Once PA was established in 2016 there was a failure to adjust opinions so meant I was never referred to a neurologist even though the mental health symptoms disappeared for the most part (e.g. lingering word finding issues) and any lingering mental health issues always resolve following B12 injection. Last psychiatrist recommended increased B12 so there is an implicit understanding and she said I should be referred back to medical services but GP doesn’t seem to have grasped the implications. It’s not the first time sadly. So... I’m not on neuropathy medication.

Presently I am in an effort to get to see a chest specialist for second opinion on increasing cough, chest/armpit/neck pain (consequences of not having early symptoms taken seriously enough and also looks like I have to scrape together money for private ct scan) so I feel reluctant to demand a referral to neurology and muddy the waters. What I find with PA is it depends on how much physiological stress (fighting flu etc) I am under that determines the severity of my symptoms. I would worry that I don’t have sufficiently bad symptoms and would have my B12 reduced after fighting since 2016 to get it increased if I happened to have a good day when seeing a neurologist.

[Nackapan in reply to RoseFlowerDew]

This is bad you fear this. A neurologist csn give you tests and treatment options for neuropathy. It can have many causes.

Very difficult if enough are not 'onside being ill certainly evaluates who is important in your life .

T C

[Mrsmr]

It is alonely place to be when you feel so unwell and not getting support you need. hang on in there and most of all believe in yourself. hope things Improve

[Damn-it]

Oh, RoseFlowerDew. I’m so sorry to hear how you feel. PA can feel so isolating at times. And with so few people understanding what you might be going through, that’s a tough road to walk. I’m glad you reached out here to us. Perhaps you can imagine all of us walking our roads in parallel- so we are not alone in our journeys, but only in how we may be experiencing them. You can always reach out here. This community has been so supportive to me too x

[Gen89]

I know just how you feel. I’ve had to push for every test I have had done with little support from family and I think many people on this site have had to do the same. It’s so stressful having to push to get investigations. You are made to feel you are making a fuss about nothing. The covid situation isn’t making things any easier! Keep going. Hopefully there are better days ahead.

[Readdaily]

I’m so sorry that you’re being treated so unfairly. Just realize you’re not alone—we are all here to support and encourage one another. My prayers are with you.

[Narwhal10]

Sending a big hug. As Velliangiriblue says it does reasonate with lots of us. I’m impressed that you only called them cloth-eared. X

[Sleepybunny]

Hi,

I'm sorry to read that you are going through a hard time.

Have you considered joining PAS who can offer support and useful info?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS website has some useful leaflets and articles that PAS members can print out for GPs or perhaps family members. Some of them can be accessed by non members.

pernicious-anaemia-society....

PAS has some local support groups in UK. No face to face meetings during pandemic.

pernicious-anaemia-society....

B12 Deficiency Info website has useful info.

b12deficiency.info/

B12d.org has had some online meetings

b12d.org/

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates that cover a variety of situations linked to B12 deficiency.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion. Keep copies of any letters sent or received.

I don't have a diagnosis of PA (Pernicious Anaemia) and it took me many years to get treatment for my many typical symptoms (over 40 different symptoms) and I met a lot of ignorance along the way from health professionals and sometimes those close to me didn't understand what I was going through.

I had to resort to self treatment as NHS refused to treat me.

How often are you getting a B12 injection?

With neuro symptoms, I would expect you to be getting them at least every 2 months.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Summary of above document

pernicious-anaemia-society....

BNF Hydroxycobalamin

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

See section on "neurological involvement" in link above .

NICE CKS B12 and Folate Deficiency

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

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

If you have the time and energy, may be worth tracking down the local guidelines on treatment of B12 deficiency for your area of UK and comparing them with BSH, BNF and NICE CKS links.

Useful B12 books

Perhaps your GP and those close to you might read one of them?

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF treatment info. See BNF link above for up to date treatment info.

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

Very comprehensive with lots of case studies.

"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

Misconceptions about a B12 deficiency

(English article from Dutch B12 website. Ranges and units may vary from those in UK)

stichtingb12tekort.nl/engli...

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency.

I've written some very detailed replies in past with lots more B12 info which may be worth searching for.

I am not medically trained.