After the appointment with the neurologist!!!!

Hello everybody,

Just back from the appointment with the neurologist, who confirmed that everything is in my mind! and he can't argue that I am not experiencing pins & needles and all the other symptoms but of course.... what else? they are down to stress! and I said that stress is also a B12 deficiency symptom he just gave me the look 'do you think you know more than i do?' - and yes, this was true but it is still stress. He did some tests but he said the result was normal ...but to be honest, he put a metallic tool on my feet, but I didn't feel it was metallic! and now that I am thinking back, he did't do the sharp and blunt test.

He said what I feel after the B12 injections, it is nothing but a placebo effect!

When I said that my legs feel they are 'wooden' in the mornings and I walk to the bathroom feeling link I am a 1 year old baby..... he gave me no explanation..only that if it was series, I would have the same feeling all day!!!!! I said that my left leg and recently my right one feel 'electric' the rest of the day.... his comment was that if it was B12 related then both legs should have been affected! and I should believe what I read online... I did point out that I don't read articles in Cosmopolitan... and the BHS guidelines are credible.

He is now going to write to my GP to recommend more B12 tests and another screening for Pernicious anaemia. That's all.... glad to hear that there is no nerve damage but did he say what I need to do about the pins & needles? NOOOOO!!! How can I not be stressed after all this?

Thank you for listening!

31 Replies

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  • Ask for a set of nerve conduction studies. If there is nothing wrong with your nerves that should show it.

  • Thank you! But he said he did not think that there was no nerve damage. But how can he say with the tests he did - you know walk heel to toe? by the way should I do this while looking down? I will ask but my GP will not refer me because he will say it was down to the neurologist to do it.

    Actually, I was just looking to see if I can have one privately... do you know how much it would cost? If there is damage, I will send them the bill!

    I can't thank enough for the support this forum is providing x

  • Sorry but the double-negative confused me. Did he say there was no nerve damage?

    The metallic tool test wasn't to see if you could tell if it was metal or plastic, sharp or blunt. It was to see if you could feel anything at all.

    The heel-toe test should be done with the patient looking straight ahead. Unless, like me, they fall over. Then you try again looking down. I still fall over.

    Nerve conduction tests are available privately, but I've no idea how much they cost. That would be the real clincher. It seems, from my reading, that the test is sensitive enough to pick up early signs of inflammation of the nerves.

    I can't really contradict anything he said. From my reading I know that peripheral neuropathy is normally symmetrical and that the intensity doesn't vary much from over a few hours.

  • yes, he said there was no nerve damage. But the only explanation he gave for my symptoms is that they are in my mind / psychological.

    So, when the BHS guidelines say ' neurological symptoms' - is there a way to distinguish between imaginary & real neurological symptoms?

    When he did the test with the metallic tool, he asked me if I felt that it was metallic. I could feel the difference when he out it on my right foot.

    the B12 symptoms in Pernicious anaemia say that they are usually on one side.

    I am glad that there is no nerve damage but I want a logical explanation... that I have been imagining pain for a year now is no excuse! plus there was no indication of wanting to treat my symptoms.

    I don't understand what is going on.... more B12 awareness days / events need to be organised. I can't believe doctors are so ignorant.

    xxx

  • Everything I've read says that neuropathy caused by a B12 deficiency is symmetrical. For example:

    "A minority of patients with vitamin B12 deficiency develop a neuropathy due to symmetrical damage to the peripheral nerves" from this BMJ paper:

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

  • Hi Vicky B12.. I some times think that all these tests, stress and aggravation , together with being patronised are just not worth it. If you have the symptoms (as you do) and you have shown improvement following the injections you had you my just as well SI anyway. You have gone down the NHS route and raised some awareness, well done for that.

    SI is cheap, easy and no more aggravation.

    Sorry to sound disillusioned but is it really worth it??

  • No, you are right. I am one step before deciding it. I can't supplement yet as I want to do the blood tests...so I have to wait for a couple of weeks.

    If that was not the case, I would be buying B12 & needles today!

    xxx

  • PS. I forgot to say that if you are diagnosed with nerve damage your travel insurance will go through the roof.

  • ?????? really??? why?? my husband won't be very happy!

  • No...my husband doesn t like it either. That's why my neuropathy has cleared up and I don t have it any more if you see what I mean.

  • That's goig to be very, very bad news for the millions of diabetics out there. If it's true. Diabetes is the single major cause of neuropathy.

  • Not so sure about diabetics but when you buy travel insurance they ask what medication you are on and when you tell them you have B12 injections they always ask the question "do you have nerve damage ".

    If you answer yes they almost double the charge.

    I don t know if they ask diabetics this question??

  • you know, they haven't tested me for diabetes... I am wondering whether the pins & needles and numbness is caused by diabetes..

  • They do free blood sugar tests at Lloyds Chemists.

  • Blood tests done at the chemist, or with home testing kits, aren't a lot of help in making a diagnosis. Even in non-diabetics blood sugar can swing wildly. Mine is about 9.5 at 06:00, down to 8 by breakfast, up to 12 after lunch, down to less than 6 before dinner.

    Ask your GP for an HbA1c test. This measures the amount of sugar attached to the haemoglobin in your blood which is a very good indication as to the average amount of glucose in your blood over the previous few months. Mine is now a nice, healthy, 45 mmol/L.

  • Is the HbA1c test the one GPs routinely use for diabetes, or is that different and also useless?

  • My hba1c is 42 and my gp in a right tizz about it 😕 i gave up sugar and reduced carbsafter easter last yr but since end of last year slipped back to resorting to sugar/caffeine to keep me goin as bn feeling v hypo(thyroid) again.

  • Thank you for pointing it out. Well, I kind of remembered seeing this test on a print out with the results. I guess diabetes is not the problem. In October I had HbA1c level - IFCC standardised (DPAT) 36 mmil/mol ref . range 20.00 - 42.00 mmil/mol

    and HbA1c level ( DCCT aligned) - (DPAT) 5.4 % ref. range 4.00 - 6.00 %

    I did know that these tests were Diabetes screening! I guess they are normal. Are they supposed to be fasting tests? I definitely did not fast.

    x

  • Yup, both of your results are nice and low, so you don't have diabetes.

    As I say, the test measures average levels over a couple of months so fasting won't make any difference.

  • Have you got a follow up appt with him in a few months time?

    If you have, perhaps you could take someone who is kind, supportive and well-informed about b12 who can tell neuro about the differences they notice in you when you have had B12 injections. Doctors are sometimes kinder when another person is present in the room.

    If a doctor told me it was a placebo effect I was experiencing, I ask them to show me the research that supported their view. I have found very little actual research on this.

    Do you keep a symptoms diary? Perhaps neuro might find this helpful. You could ask for a second opinion on neuro problems with a different neurologist but I guess there is no guarantee your GP will refer you.

    Did neuro do a romberg test? Other tests for proprioception problems?

    Info in link below about romberg/propricoeption tests.

    patient.info/doctor/neurolo...

  • ???? no!!!

    No follow up appointment - just referred me back to my gp for B12 tests.

    I have kept a diary symptom for 2 weeks and I showed him and he just a had a quick look & dismissed it.

  • Hi VickyB12 I am so disappointed for you :(

  • You are so sweet <3

  • Hi,

    So sorry to hear about your unhelpful appointment. I had several unhelpful appts with neuros and other consultants and was spoken to unkindly by one. At our next appt I had a witness with me and had a better appt.

    In the past I have written polite letters with extracts from B12 documents, lists of sympotms, blood test results to doctors/consultants, along with a request for letter to be filed with my medical notes, when I had concerns about the consultation. If their mind was really made up I'm not sure it changed anything for me.

    It made me feel better that I had expressed my opinions clearly which was hard to do during appts due to brainfog. However it's possible that it annoyed one or two of them who perhaps weren't used to being challenged. My thinking at the time was that if I ever went down the route of making a formal complaint, I had proof ( I kept copies of letters I wrote) that I had raised the issues.

    I have seen both NHS and private consultants and in general have found an equal lack of understanding about B12 deficiency with the exception of one individual who had a reasonable level of knowledge about B12 deficiency.

    Link about writing letters to doctors

    b12deficiency.info/b12-writ...

    Sadly you are not the only one who has had frustrating appts, see link below.

    b12deficiency.info/letters/

    Unhappy with appts?

    citizensadvice.org.uk/healt...

    Advocacy services

    seap.org.uk/

    nhs.uk/conditions/social-ca...

    HDA patient care trust

    hdapatientcaretrust.com/

    Perhaps HDA may be able to help? They offer free second opinions on medical matters.

    "only explanation he gave for my symptoms is that they are in my mind / psychological. "

    I truly empathise with you having been through the same experience of being told it was all psychosomatic, still feel angry about this years later. If it was psychosomatic how come when I finally started to get B12 , some of my neuro symptoms disappeared. Only one of the people I saw was interested in the fact I had had several years of B12 in grey area or below range...

  • Thank you! It is you have read my mind. I think I will write a letter, and yes, they do not like to be challenged! I heard so many you are right responses but still he dismissed my symptoms as imaginary! It felt as he believed I had the symptoms only because I read them online! x

  • I was accused of this by a GP simply because I asked for a blood test (not B12). Without any discussion she said "I think you are making up symptoms you have read about on the internet" and that was the end of it.

  • Oh frodo,

    That sounds so unkind.

  • Yes. It was very demoralising. I wish I had complained but I usually tend to think people are doing the best they can. Which in her case ...

  • My tingling started on left side but over years progressed to tingling and numbness in both hands mainly at night. Id wake up and hands were so numb i could cut them off. I would also drop things in day. Since supplementing high dose sublingual methylcobalamin i no longer have this but when i try to reduce tablets the symptoms creep back starting on left side again.

  • I'm in the process of writing to my GP to ask him to consider treatment of B12 defiency (low, and out of range, along with high, and out of range Folates!!!) because, on seeing these results, the comment left is 'No action required' after repeat tests with 3 month interval - same result both times. I just couldn't believe this and felt it just demonstrated a level of ignorance.

    I'll post the outcome - to which I'm hoping / expecting to start treatment very soon! ;)

  • Not in the right forum I know But I feel for people up against it with smart a**doctors

    Sadly it happens with other illnesses also.

    I had tried to get help for bad stomach pains could hardly eat snd lost a lot of weight.

    The consultant said 'It is your responsibility to feed yourself'

    After further suffering It transpired I had a cancer causing the pain.!!!

    It still angers me 5 years later

    I felt so weak and not believed that I couldnt even stand up for myself

    .

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