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Pernicious Anaemia Society
15,823 members • 11,097 posts

neurologist pah!

I am spitting feathers with rage - I need you all to sooth me down. Saw the neurologist again today 'you have severe peripheral neuropathy - you must find a way to live with it.' I (hopefully) mentioned frequency of b12 - and he said 'oh no no - sometimes I think you all like needle stuck in you '. I strongly denied this, but that was the end of the consultation. pah!

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furious on your behalf... hope it helps ...grrrr ... the arrogance and insensitivity (and ignorance...)

I just did my third self-injection (4 in 2 weeks now) and have the least pain in my feet in a year (had 6 months on crutches til B12d was diagnosed) plus I can sleep at night ....and it sounds as if you have worse neuropathy than mine. I do encourage you to go down the self-injection route, if you can.

Mashie

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Hi jillc39,

I agree with Mashie44. You really should think seriously about self injecting, or try and get someone else do it for you.

You are annoying yourself going near them. It really is not fair and I'm sorry that you had to go through that today. 😤

J 🍀 xx

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Totally agree , I've been self injecting for 2 months now. It's so easy and there's lots of support on here for u. You need injections every other till no further improvement . How frustrating to meet a consultant so ignorant to your needs. 😤

My husband did my first ( after I had one from the nurse) then I was away!!!

Go for it, get healthy and happy xx

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Grrr GRRRR GRRRR!!!!

Agree with what everyone else has said. I'd at least do some SI in the meantime while getting your bearings... and if you can find the energy, I'd start writing some sharply worded letters! Perhaps the PAS can help. What kind of an idiot neuro is that?! He should have his friggin license revoked! I pity his other patients. :( Grrrrr!!!!

Sorry I can't think of anything to say to soothe you LOL, this makes me angry too! ...Just some hugs xx

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Well I love being a pin cushion and I expect you do too.

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I've been doing my own injections since 2008 and I *still* have to talk myself into having one Every. Single. Time. It truly aggravates me when anyone implies that I could want more injections just for the 'fun' of being injected. What I want is to not have the B12 problem in the first place so that I don't have to deal with any of this nonsense, but that's not how life works. I can't think of anything soothing to say, but I totally understand your frustration with that idiot doctor. I'm sorry that experience was so unhelpful.

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\I am so so grateful for all your replies - and yes, my daughter will SI me..... if you see what I mean. What WOULD I do without you all..... I would have been left feeling truly awful after the consultation today. wont see him again.

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Have you considered getting an appt with a UK podiatrist? I'm assuming your feet are affected by the peripheral neuropathy.

In the UK, podiatrists with the appropriate training are allowed to prescribe B12.

martynhooper.com/2015/11/30...

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oh really, I have been thinking of seeing a podiatrist.... how do I find one?

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nhs.uk/livewell/foothealth/...

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GP, Neuro, Endo, Pain Clinic, MSK clinic and more - I could spit feathers at them all. You have my empathy and lots of hugs.

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appreciated sallybones and everyone. Truly without you all I would be thinking I was at fault here. liking needles indeed!!

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Needless to say don't get needled do it yourself jillc39 :)

P.S. Don't forget the folate....

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First laugh Iv'e had today.

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beginner1 your pin cushion comment made me laugh just as much! :D

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Four people in my family, including my partner, have pernicious anaemia with various forms of neurological damage: my mother dementia and my partner severe peripheral neuritis - due to failure to diagnose in time. We started with IM injections with loading doses and then monthly, but we have all survived well on 5000iu sublingual B12 daily now for at least a year and a half. Are none of you considering this as an alternative to the injections? At first we had to import from the United States to Australia, but there is now an Australian product, so we get that and it is very cheap.

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It would be much more convenient to be able to do that , I agree . But most people with Pernicious Anaemia just have to have injections. I know that I do . I tried patches , sub-lingual lozenges , nose spray , all to no avail. It's just amazing to me that the sublinguals work for you. Great though !

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We are in Australia and my husband who does NOT have PA swears by the B12 sublinguals that I bought to try. However, I am the one with the diagnosis of PA and they do nothing for me. I would love to be able to suck a lovely little red tablet instead of sticking a needle into my thigh! Genetically, I have the mutation causing a methylation problem and injections are the only solution I have found so far. I keep looking, though! Sadly, I'd say there are a lot of people in my shoes.

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Could you tell me a little more about your methylation problem and how it was diagnosed?

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We did a DNA test with 23andME and we put the results through Genetic Genie and for a donation they sent a list of mutations.

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How did you find out about the effects of the genetic mutation?

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The results contain a commentary and it was confirmed by my Functional GP when he looked at the sheets. It was all quite interesting and confirmed the symptoms I had been displaying.

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Indeed as others have said, sublinguals dont work for me. I took 1000mcg daily, for something like 4 years. Still got bad neuropathy. Just before starting injections, I took 5000mcg for 3 weeks and 10,000mcg for 1 week. Still, absolutely nothing, nada. Within 3 *days* of starting injections, things started to get much better. They make work for others, or perhaps in the beginning stages of PA.

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Unhappy with treatment?

b12deficiency.info/b12-writ...

Person who runs website can be contacted by e-mail.

citizensadvice.org.uk/healt...

seap.org.uk/services/nhs-co...

hdapatientcaretrust.com/

UK charity that offers frees econd opinions on medical diagnoses and treatment.

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What do neurologists actually do other than refuse to treat and/or diagnose people?

Is it the case that they only treat clinical symptoms of disease that is immediately life threatening? I'm beginning to realise that for the medical establishment, conditions which affect quality of life/ability to work/maintain relationships are no longer seen as worth treating, other than with anti depressants et al, and prevention is not often taken into account (other than via vaccination programmes). Finding the cause rather than just treating symptoms doesn't seem generally to be a diagnostic route either. Please tell me if I'm wrong.

Even though it's probably all about money, prevention (eg giving adequate amounts of B12), would in the end save loads of money and medical appointments as problems caught early would prevent the need for greater intervention later.

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totally agree with you Frodo. I've come to realise I'm a pain in the proverbial for the NHS because I won't give up or give in.

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I'm afraid you're right. Quality of life appears not to be a concern. In 38 years of illness, I've met just two NHS doctors who genuinely cared about how I was feeling and managing, though neither of them gave me appropriate treatment because of their ignorance of hypothyroidism and PA.

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And there's a difference between the medical profession not accepting their diagnostic methods and treatment may be inaccurate/inadequate, and medical professionals who might know that, but are unable to offer what patients need due to a lack of funding and resources in the NHS. People have posted here that they have paid privately to see doctors and have been fobbed off with the same non-treatment and disinterest.

Now the NHS is under enormous threat and apparently being run down, when it's obvious that we desperately need our NHS to carry on, but with better management, more emergency care, more funding, more facilities, more time and care per patient, more hospitals, and far more provision and diagnostic services for chronic pain /multi-symptomatic /auto-immune /mental health patients.

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After si for about a month and a half, my husband's severe neuropathy is improving significantly at least the terrible pain. The cold and numbness are not much changed, but truly, I wasn't expecting anything this soon so very optimistic.

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