neuro symptoms for a year before diagnosis of b12 deficiency

Is there any hope of recovery? Symptoms started as cold feeling very painful pins and needles in feet. They felt numb, but, I did and continue to have feeling in them. Progressed rapidly to stocking/glove pain and tingling. That got better over time. But the tingling in my hands is intermittent and my feet burn, pins and needles, severe pain and feel cold and numb (but I do have feeling in them) 24/7. It's been 11 months since this started. Extreme anxiety started 8 months ago. Started the injections just this week. Can i hope to get some of the pain down? My neuro said my nerves were fine based on an EMG. But, I have not had an MRI or small fiber neuropathy test. I had eye twitching 2 years ago but that got better within about 4 months on it's own. I'm terrified about my outcome. Thank you in advance.

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  • Hi,

    Everyone is different but with enough treatment - this maybe as much as daily self injections - and supporting supplements you do stand a very good chance of recovery. This may only take a few injections but you could get improvement for years, literally, so even if it doesn't go immediately, don't despair. I have had deficiency symptoms for more than 20 years and now after 500 injections I am still noticing week on week improvements.

    The critical thing seems to be getting enough injections and the right balance of the other vitamins and minerals that your body needs to make the extra B12 work at cellular level.

    For more information, including sources of supplies, you could look up my profile, by double clicking on my name, and see my post "My Experiences".

    I found additional potassium and folate helped my anxiety the most, once I was getting plenty of B12.

    The great news is you now know what's wrong so the damage has stopped and the repair has started. Don't be too alarmed by odd sensations as your nerves become "alive" again - in time they will settle down.

    Many people keep symptoms diaries to track their progress.

    Good luck and I hope you feel better soon.

  • Hi Caro43, I've read on here and many forums about people who have had injections and recovered from all kinds of symptoms over time and 11 months is not too long in this strange world of b12.

    I really understand your fear and it would help your nerves no end if you could find a way to relax a little more. Could you try mindfulness or yoga, whatever works for you.

    Please keep us posted and although sometimes hard to do, be patient with yourself. Warm wishes to you.

  • Hi caro43 there is life after P.A. and yes in the early stages of treatment some symptoms seem to get worse before they get better and sometimes "new ones" appear as the B12 gets to work repairing the damage done to your nervous system, but at least now you are on the road.

    I was a walking Zombie at the age of 30 when I eventually got diagnosed with P.A. This was 13 years after the surgical removal of two thirds of my stomach due to a gastric ulcer so I was by then probably "running on empty" as far as reserves of B12 were concerned so I know a little bit of how you are feeling.

    As deniseinmilden says keep a healthy level of Folate as this is essential to process the B12 you are having injected and try not to worry overmuch.

    I've had P.A. for 45 years and I'm still "clivealive" at 75.

    I wish you well.

  • B12 Oral Spray, which contains Methylcobalamin which is very important - and so is Vitamin B 1 - which contains Thiamin 100 mg which contributes to the normal functioning of the nervous system - I can highly recommend these!!

  • Just a question: how does this sublingual spray work? How long do you need to keep it in your mouth? As soon as I use a sublingual I produce a lot of saliva and water it down, and after probably not even half a minute I need to swallow it.

  • Do your best to hold but I not do that for long but if you persevere it will start to work !

  • Thank you all. I think I have had a b12 deficiency for a very long time. Well over a decade, maybe more. But the severe neuropathy pains started 11 months ago and that is what scares me as I did not know what was causing them, so, I did nothing. The freezing, burning, stabbing pains in my feet are 24/7 now. Hopefully, this does not change your answers, as they gave me hope!

  • My neuro said my nerves were fine based on an EMG

    Did they say what they thought was the cause of the neuropathy? How is your balance (can you wash your hair in the shower without having something to lean against)?

  • He thought it was either anemia or diabetic, but, I would need more blood work. I do not think it is diabetes, really. I am 43 & barely over 100 pounds and do not eat sugar and rarely any grains. my non fasting glucose serum was 121. The neuro only did an EMG, though, and no tests for small fiber neuropathy. I was tested a year ago by another Dr. with tuning forks and another small device and was told I had neuropathy in the finger-glove & stocking pattern, but, I had no pain at all, just failed those tests. Now, the pain is 24/7 in my feet and almost as often through my calves.

  • A fasting glucose of 121 is fairly high, and might qualify as pre-diabetic. Do get that checked out properly. Get some longterm sugar and potentially also a glucose tolerance test.

  • 121 mg/dL (or 6.7 mmol/L for those outside the US) isn't high at all for a non-fasting blood glucose. But it's still not possible to rule out diabetes from that type of sample. You really need to have your HbA1c measured. This shows how your blood glucose has been over the previous few months, which smooths out the normal daily variations.

    Eating little sugar and being thin are no guarantees against diabetes. LADA (Latent Autoimmune Diabetes in Adults) can strike at any age and affect anybody. And it's more common amongst people who already have one autoimmune disease (like PA). A test for anti-GAD antibodies is the way to tell if you have it.

    I'm surprised the neurologist didn't do any vibration testing (tuning fork) or needle-prick tests (jabbing you softly with a pointed stick). Can you go back to the one that did the proper testing?

    My neuropathy started off as numbness, then the pins and needles, followed by the evil imp jabbing needles into my legs when I wasn't expecting it. I started taking gabapentin and the imp has been all but silenced. I still get the odd sudden pain, but it doesn't keep me awake at nights.

  • Oh, and my balance is fine. It is just the severe, nonstop pain in my feet and calves that terrifies me. I ignored it for almost a year!

  • Working balance is good. It suggests that the nerve damage isn't too bad.

    I saw my neurologist yesterday. He asked me to try hopping on one leg. I very nearly fell on one of the two students he had observing.

  • My non fasting glucose was 121. Is that pre-diabetic?

  • Thank you for replying. I am sorry that you almost fell over on the students! I just hopped on one foot and I have no problem with it. It is just severe nonstop freezing, stabbing pain in my feet. When i drive they are so so cold, almost frozen. I can move them but it is painful. I am so upset that I did not treat earlier, all I can do is pace around my house and despair. If this pain doesn't go away atleast by 75%, I just do not know what i will do.

  • Have you considered drugs for the pain. Normal painkillers don't do anything. Strangely enough certain antidepressants (amitriptyline being the favourite) or anti-epileptics (gabapentin or pregabalin) are excellent for fixing the worst of it.

    Taking gabapentin meant the difference between sleeping through the night and being woken every few minutes by the pain.

  • I'm sorry I am asking so much. But, if it is small fiber neuropathy, would one get balance issues?

  • Sorry, I don't know. I'll have a look through my peripheral neuropathy book this afternoon.

    This paper - ncbi.nlm.nih.gov/pmc/articl... - says they did a romberg's test (for balance) on patients with SFN, but don't say what the results were. It does seem that a skin biopsy is the gold standard for diagnosis.

  • I take gabapentin every night and xylem to help me stay asleep. I have gotten between 3-4.5 hours sleep with this combo for years. It is awful. That's why I am so scared that I did even more damage to my nerves

  • OK, had a scan through my book and it's not really a lot of help. I would ask for the following -

    A skin biopsy to properly diagnose SFN.

    A series of tests looking at all the possible causes - Hb A1c for diabetes; full antibody screen for coeliacs; B1, B12, MMA, hCys, B6 to test for vitamin deficiencies or excesses; full blood electrolytes; anything else they can think of.

    However, many cases of SFN are idiopathic, which is medical for 'we just don't know'. Some of the known causes may be reversible to some degree.

    But you need to know the cause before you treat it. B6, for example, can cause neuropathy if there's too little of it - and if there's too much of it. So blindly treating yourself without being tested may turn out to be totally the wrong thing to do.

  • If I took a suppliment with B6 in it today, when can I do the B6 blood test, do you know, thank you.

  • Well, if you normally take B6 supplements and you really want to see if they're raising the levels too high. So I would take the test now.

    If you want to see if you become deficient without supplements then I'm afraid you may have to wait a while. The half-life of B6 is about 25 days. So it'll take a few months before blood levels are down to non-supplemented state.

    ncbi.nlm.nih.gov/books/NBK1...

    That's because, despite B6 being water soluble, it is stored in the muscle. So the stuff you took today will have gone in there to slowly leach out over the coming months.

  • I had severe pain in legs and feet - that is what sent me off to the gp in the first place - and I must say since the b12 injections and pregaberlin I am much much better. Just every other night I have severe pain in one foot - but that's progress!

  • Glad you are doing better. i wasn't diagnosed until almost a year after the severe nerve pain began. Also beginning to think that the small fiber neuropathy I was diagnosed with 2 years ago which started well over a decade ago was also from b12 deficiency. I had not pain with it though, just numbness that went away. Now the pain has been unrelenting for almost a year. I gather from that, there is little hope of my nerves recovering at all.

  • Just to add to what foggyme said below - I wouldn't despair just yet! While my burning nerve pain was only around for a few months prior to starting injections, my other neuro symptoms - poor balance, lack of strength, and trembling - had been around for several years (if not longer). Surprisingly, balance and strength were the first things to normalize - literally within the first few injections. So it does seem that some recovery is possible even after long term issues. I think I've been B12D for a long time too.

    But, you will have to be patient (something *I'm* terrible at!). Now after nearly 5 weeks of loading doses, the burning and numbness have turned into pins & needles and gloves & socks (it's still a bit up and down at the moment). So even though my most severe nerve problems were only around for a couple of months, it's still taking some time to completely recover (and I hope I do!). Keeping a log sheet has been quite helpful - keeps my motivated on days when I feel the nerve issues getting worse.

    Also, my symptoms DID get worse before they got better (edit: after starting injections). The numbness turned into severe burning and only started to reduce after about a week or week and half. So if things are getting *worse*, that's actually a good sign. ;) Good luck and don't lose faith yet!

  • Hi Caro43. This sounds just horrible - I'm sorry you're having such a tough time.

    I'm just wondering what B12 regime your GP has you on (GP's don't always get this right)?

    With neurological symptoms - which you obviously have - you should be having the following doses (Hydroxocobalamin if in the UK):

    6 x 1mg every other day (the loading doses) then

    1mg every other day - until no further improvement (this can take many months) then

    1mg every eight weeks (though this is not enough for some people - but that's another story).

    If your GP has you one the once every three months regime this will not be enough for you and is not in line with the guidelines for treatment of B12 Deficieny with neurological symptoms. (Excuse if you already know this and are on the correct regime - no time to check you previous posts right now).

    It's crucial that you get enough B12 so that maxim repair of your nervous system can take place. This can happen but it's a slow process and can take many months (even years - as others say).

    And as deniseinmilden and clivealive say, keep an eye on your folate levels - B12 and folate work together so if your folate is low, your body cannot utilise B12 properly. (Assume your GP checked folate levels? If not, ask for them to be done - should be in the top third of the reference range).

    Ferritin can sometimes also be a problem (especially if you have absorption problems) that will make you feel very ill. Get this checked as well if not already done. Levels best kept at 80 -100.

    I know that you're feeling really bad and beating yourself with a big stick for not going to the doctor's sooner. But you've done it now, and treatment has commenced. And people here say that stress makes their B12 symptoms feel worse 😖. So please try and be kinder to yourself and take heart - people here report continual recover (albeit sometimes slowly), even after years of untreated or undertreated deficiency.

    It's really early days for you yet and there is time for things to get better - and slow changes are sometimes difficult to spot, especially at first.

    And the hopping on one foot is very very impressive 😀.

    Anyway, take good care and please do a new post if you're not on the neurological regime of B12 - folks can advise on how to try and get your GP to prescribe this for you.

    👍👍

  • I helped myself because I had no help from doctors who did not know anything about B12 deficiency etc. You do what you can - it is good if you have help from surgery doctors who are educated in your symptoms !

  • I will not continue !

  • I will not continue !

  • NOT CONTINUE !

  • I have 1 ml bottles. I am confused by the mg. Can you explain?