Recent nerve conduction studies concluded that I have no nerve damage, which is good.
So, my diagnosis? I have the placebo effect. Woohoo, lucky me!
It’s such a relief to think that my loading dose over six appointments with various nurses at the surgery may have formed part a study that I didn’t consent to entering.
I didn’t check, but I’m guessing that my symptoms are/were all in my clever mind.
And a funny - since I started the jabs, the soles of my feet go so wrinkly in the bath! I hadn’t realised that they had stopped doing that - but thinking about it since, it’s actually a large number of years since it had happened, and that I’ve been madly sliding around on the floors of baths and showers. They take ages to smooth back out. The first time it happened I was only became aware because my feet hurt when I stood up!
Enjoy the Jubbly (or Jumbly as my neighbour said) if it’s your thing. Otherwise, enjoy the long weekend.
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rogergee
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I was dumbfounded that my Nerve Conduction and EMG were all normal. Although one of the muscles on EMG was 'slightly abnormal', and I was told 'Because you're a man we don't worry about it'.
OK then?
Chances are that the tinging or nerve issues you had were patchy bits of myelin wearing away from the small fibres. And in general, the test don't pick these up. They focus on autonomic and motor nerves and if they work fine then you're fine too.
No medics seem to care about Small Fibre Neuropathy. But with enough B12 they may eventually repair with the myelin coming back to reduce the tingling or other sensations.
I was left with a diagnosis of Functional Neurological Disorder, lucky me. And I still haven't seen the specialist who cancelled it twice.
Thanks. Hope you get your appointment before long.
i do have so much improvement in my neuro symptoms since starting the jabs, but I’ve also been left with a changing neuro issue in my foot, which is worrying as well as painful and sometimes limits my movements. I’m concerned about it not getting better as it has worsened.
Thanks. Im avoiding the app. to be honest since I don't want an FND diagnosis. I know what I have but it's being dismissed due to various issues with diagnosis.
As to your foot, did they test it directly?
I suppose pain can mean different things for different people, but if there is numbness or tingling or distant feelings theres a very good chance it will resolve in time if you have regular and consistent b12 intake and multivitamin/multimineral that includes folate and other B vits.
Hope is everything with this condition and with regular self intake its likely to improve. I don't personally rely on my Dr to give me what I need so take every step for myself to keep hoping and healing.
No, they didn't test it directly, despite my best efforts!
You're wise not to rely on the GP to give you everything you need. I learned that lesson the really hard way about 25 years ago, in regard to another condition.
B12 deficiency can affect nerve function in more than one way. Most commonly we assume that there is damage to the nerves that needs to heal. But, it is also possible that the problem may be not having B12 to help in the process that resets neurotransmitters - which in theory should recover more or less immediately once B12 levels are restored.
Hi Gambit62I am very interested in this aspect of it - have you found any articles that expand on this (the resetting of neurotransmitters part of B12 function), I would be very interested to read them if so?
I have problems with weakness / episodic weakness, particularly in hands, and am trying to identify what part of my B12 deficiency might be causing that. The episodic weakness disappeared after my last injection, but was back within 5 days - I have been wondering whether it might be a channel problem (as it seems to disappear and reappear like a switch flicking on and off, rather than something that takes a long time to heal.
All in all, I have found there is very little written about the nature of the muscle weakness that occurs with B12D..
A good way to search research databases is with Google Scholar. Google "Google Scholar", and one of the responses should be "Google Scholar". Click that, and a page should open with a big "Google Scholar" label, and a search box in the middle of the page. This is a search engine for all the research databases. You don't have to worry about Boolean, etc. If you want to know about treatment, review papers, which review all useful papers on treatment, are a good way to go. For example, to find the review papers on treatment of B12 deficiency, enter these search terms: B12 deficiency treatment review.
Thanks Gambit62. I think you’re probably quite right about most of my neuro issues, I’m just left with one hand to still settle, and the foot problem that has changed and got worse.
I do hope you are satisfied with your nerve conduction results. The medical ethical committee might have something to say about your being part of a study that you didn’t consent to.
What a great diagnosis. The placebo effect. Apologies, but I have bitten my sarcastic tongue long enough. So, here goes: -
Dear Doctor,
I am particularly concerned about the epidemic of idiotitis. It is mainly contracted in late teens and early twenties through verbal contact. Although, it can occur at any time. It is a chronic condition but acute events can occur under certain conditions.
The symptoms can present at any time without warning. It is exacerbated in the presence of those suffering vitamin B12 deficiency/P.A. It causes the brain to shut down and the mouth to keep talking. The incidence is extremely high within the medical profession.
Apparently, the only cure is to walk over to a wall and bang your head several times against it. I do hope you feel better soon.
Thanks Narwhal10. I was just being facetious about being entered into a study without my knowledge - I did have B12 jabs for my loading dose.
Yes, I am pleased with the test results, particularly as when I fell down the stairs many years ago I suffered 'nerve damage' for which the only remedy was surgery that could have made it worse, which I politely declined. So what a turn up! Incidentally, that injury site, which hasn’t hurt since we changed to a new mattress 18 months ago, has started up again since my jabs - I’m hoping this is a rather belated time of healing for it once and for all.
Hi RogergeeI’m sorry to hear that things are so frustrating - and I hope you manage to enjoy your weekend despite the frustration!
Does anyone know if nerve damage from B12 deficiency is uniform (across all nerves in a limb, for instance), or if it can be completely focal, just affecting say one nerve rather than multiple? (eg just the median nerve and not the ulnar??)
I have had EMG tests and nerve conduction tests, and I have noticed that they seem to follow a ‘sampling’ sort of process, where they take a reading from a range of set particular points, rather than actively trying to hunt down the problem.
It strikes me that this approach is probably fine when trying to diagnose a widespread type of thing, but not for focal things - I have always been surprised that when I have clearly said that I have a problem only in a certain location, I would have expected them to dig about in that location to see if they can find it - but instead they do a sampling of points seemingly here there and everywhere!
I can't speak to conduction tests as i was refused multiple times. But what happened to me was focal as you describe it. I guess mine was the ulnar nerve only: my pinky & ring fingers, half of my palm, and the lower half of my arm all the way to the elbow were all completely numb. Bilateral. Other half of the arm/hand was totally fine, but i had severe muscle weakness and could barely do anything with my hands. I guess the muscles on the ulnar half were paralyzed. I pled for conduction tests and i still can't believe they refused them. Malpractice. I still get tingling along that nerve when tired.
Hi Jade_s That sounds horrible.. I’m so sorry to hear that. What sort of muscle weakness did it lead to, and what things did it limit? For me, I think it is focused on the median nerve, as I have finger grip issues with my index and middle fingers, and problems (but less so) with my ring finger. It gives me big problems writing, and is really bad in the mornings. It’s in both hands, but worse in my right (my dominant side).
Jade_s, has your muscle weakness gone with frequent injections? I am on every three months ( from GP), but i think I need it more (maybe weekly)...
I could grip things, just barely, with the three remaining fingers. I could not for example squeeze a bottle, no matter how much force I tried to put on it. Think mayonnaise or ketchup bottle or anything similar. I could type but I can't remember how well I could write. I can imagine if it had been on the other nerve, I wouldn't have been able to write at all. Basically anything requiring more than an ounce of strength was difficult. Picking up a fork was ok, cutting with a knife was not.
I started at once daily hydroxy and later moved to twice daily. It took a few weeks to start regaining sensation and some muscle function. I think after a few months' time it was much better. It did completely go away but can't tell you exactly when, maybe 1 year into daily injections?
So yes if i were you i would probably go back on at least alternate day until that problem, and any other neuro issues, disappear. Exactly what the UK guidelines say. And only then try to reduce, slowly. I can't remember what your symptoms are, will go read some of your older posts.
Yes I see you do have neuro symptoms. You should find a way to get more injections - whether through your doctors or SI. Otherwise you risk it becomes permanent at some point.
It was pretty horrible, thanks. It took several years of injections before I could function like a normal independent person and even consider going back to work. Crazy thing in my case is that while I had some paresthesia and other mild neuro symptoms for years, without realizing it was b12d, the numbness and burning came on almost literally overnight.
Thank you so much for your replies. It is really reassuring finding out it is not just me!
Unfortunately, neurologist hand examinations tend to rely on hand shake and pushing against their hand sideways with your pinky finger. Hand shake for me is still strong, as I can exert force using my thumb and pinky finger, and the little finger is not affected, so I think they disbelieve me when I say that I have weakness. It is really frustrating.
Actually I have never been on the neurological protocol - GP put me on standard protocol (6 doses then every 3 months). Despite neuro symptoms in my notes.
I tried ordering B12 online from Germany (using wedgewood’s brilliant instructions), but before I had paid, my partner came in and was horrified (as if I was trying to source heroin or something!) and then said ‘why do you think you know more about it than your doctors, they are the experts’? Which has made me feel really crushed about it all (I think my partner thinks I am fussing about nothing).. So - am ‘overdosing’ daily on over the counter B12 in the meantime to try and manage it.. but I have a functional B12 deficiency, so I think that over-the counter is of limited benefit to me.. I have been using methyl spray (for your mouth), but weakness still here, tingling legs, tinnitus, and overwhelming fatigue.. :(((
I understand. But your partner needs to understand it is totally safe and nontoxic even in extremely high doses - 5g (=5000 mg = 5000 x 1 b12 ampoule) is given for cyanide poisining from smoke inhalation. You can google cyanokit.
It is no different than a diabetic injecting themselves at home.
Yes when it comes to b12 doctors are clueless , why else does this and similar forums exist??
Has he seen the BCSH guidelines - that your doctors should be using - that state "alternate day injections until no further improvement" when there is neuro involvement? Maybe HE can push your doctors for better treatment if he doesn't want you to SI. Look for Sleepybunny's posts, there is a link to the guidelines in those.
He also needs to understand that nerve damage can become permanent if not or undertreated.
Has he seen the Sally Pacholok movies? Watch them together - start with the 1st one and work your way down. b12deficiency.info/films/
Unfortunately sprays and tablets won't do much if you have malabsorption.
It's difficult to stand your ground when you feel ill and are new to this. But believe me, your life will change. Xxx
Even my GP said jabs every 3 months going forward would be acceptable since they wouldn’t harm me!
Someone on here kindly explained about usual the sublingual drops but mixing them in water and sipping it throughout the day. I did start, and held that liquid sublingually for a while before swallowing it, but then I started the jabs so I didn’t need to continue.
My husband is the same.....😕 I havnt even got as far as ordering stuff. I have that much going off, I'm always at the gp. I sware I thinks im making it all up.
I saw my GP so many times in the span of the 10 years prior to getting seriously ill from B12D. I repeated got offered prozac, xanax, and other depression and anixety meds. They may all think it's in your head but it's NOT, I promise you. Well, B12 does affect nerves including the brain so in one sense, it can be in our heads, but it's not psychological.
People ‘thinking you are making it all up’ is such a difficult one (I get it a lot too) - the symptoms can be so wide-ranging and seemingly random.. I have an increasing list of them unfortunately, and I’m sure that makes me look neurotic!
"Why do you think you know more about it than your doctors, they are the experts"
Love it, my partner said it's just a vitamin.
Now he will let me inject him having found out for himself.
Would he be willing to read what is written on here, after all I am sure he would prefer to have you bouncing about, instead of constantly disagreeing with you.
Thanks Sallyannl Unfortunately I don’t think my partner be willing to read things on the forum.. I tried getting them to read some of the ‘could it be B12?’ book, and they only read a couple of pages. I don’t know how to overcome this..
Crikey! That’s a difficult situation for you to be in. I hope your partner can be persuaded that you are just trying to get improvements for those symptoms. Best of luck with it all.
I am right dominant, had right sided trigeminal neuralgia (facial nerve.) I have two nerves in thigh that burn when I walk too much. Plus injecting in that side is a tad painful.
Interesting, thank you. My problems were similar to yours 22 years ago and it was blamed on RSI. Last year I had nerve conduction studies as my left lower leg and knee have gone numb (tests didn't show much) but they also did thermal threshold testing for small fibre, which did - so now they say it was probably small fibre all along. Just don't know why as there can be many causes, although the B12 is part of it and probably was all along. Seems to be genetic & cellular, so still not recognised as such.
I have taken oral in some form my whole life as we have several generations with B12D or (later in life) PA. So I went from small dose cyano in a multi, to bigger cyano, then found out about methyl which my dad was doing better with, so changed to that, then sublingual methyl, then added methylfolate which improved things quite a bit. More recently, now I know some relevant SNPs, I've added adenosyl and hydroxy, but all sublinguals. Hoping that Neuro will do some more testing and consider injections, but have my doubts. Waiting for next appt. But to answer the question! The numbness in knee reduced and I'm wondering if the adenosyl and hydroxy might be bringing back some feeling as I get the odd itch where it was just numb. The hands and arms are still a problem although more functioning than they were but I think some of that is magnesium (plus other changes) - one of my SNPs is COMT (mentioned above) and it is a magnesium-dependent enzyme. I noticed considerable improvement when I added it (mag oil on skin, in my case). mygenefood.com/genes/brain-...
Glad to hear tablets seem to be working for now, but just keep an eye on symptoms especially if there is known PA in the family. If I were you, I wouldn't wait too long, especially since you seem to have lingering symptoms. My mother and sister were fine on tablets for years but eventually had to switch to injections. I suspect if they had started earlier, they wouldn't still need daily injections 1 year on. All three of us started out self treating because our levels were raised due to tablets, so no doctor would treat or consider B12D/PA. Anyway just my 2 cents.
Thanks for that and I agree. My symptoms are far from lingering so I'm not at all sure that the sublingual is enough, but I am hypersensitive to medication (and chemicals, foods.....) so even finding sublinguals that I can tolerate has taken time and the idea of injecting (anything) worries me enough without having to go it alone. I know extreme reactions aren't that common, but if they can, I probably will. My Neuro appointment should be imminent, so I'll decide after that. I can see it becoming necessary, for myself and dad. Best wishes.
I can understand why you're apprehensive. Hopefully you wouldn't have a reaction, and maybe it would even help your sensitivities. It may even help thyroid work better. Good luck with the appointment! Best wishes back.
Thanks! Thyroid function couldn't be much worse....I hope. And hope not to have to find out. Dr Chandy seems to suggest that low B12 over time may well result in central hypo and it looks like that is what I've got.
Possibly, I saw your post on TUK. I don't know much about central hypo but many of us here do seem to collect hormone and other autoimmune issues. Unfortunately!
Thanks Dilly_blue. It is frustrating. It’s a mixture of things really - I’m so grateful that I got my loading dose, and will continue to get jabs every 3 months at the surgery, but I’m still in a bit of a state of shock as that was the last place I expected to experience medical gaslighting. I seem to have just been cut loose regarding a worsened neuro issue in my foot. Hey ho.
I’ve just had a thought.. your wrinkly feet issue sounds like a great question to submit to the New Scientist magazine (they have a section at the back where readers submit questions, which are printed one week, then a range of answers are printed the following week, from different points of view (according to the scientific specialism of the person who has answered it)!
I’m glad that your tests were ok and I’m even more glad you are getting b12 injections anyway. I don’t place much stall on the nerve conduction tests. I assume they don’t show anything until you are in such a bad way nobody would question your issues. My mum had them and was told she was fine even though she absolutely knew she wasn’t and 5 years later she was in a wheelchair. She didn’t get her PA diagnosis till that point. I’ve had them and I am apparently also ‘fine’ even though my pins and needles drive me mad. It’s SO frustrating. I stopped trying to push the b12 deficiency route with my GP but I’m really interested in your comment about the wrinkly feet. I forgot that was a thing. You’ve given me something to aspire to - I’m going to get back on it! Thanks for the inspiration!
Brilliant! I had too! I’ll be there, spurring you on to achievement.
I was lucky because my GP went and spoke to another doc who knew more about it than him, who said that I was right about the British Society of Haematology saying that the blood tests are not accurate and that, in his opinion, my B12 level was likely to be rather lower than it was showing, so I should be treated because of my symptoms.
One of the best summary papers on B12 deficiency is called "The many faces of B12 deficiency", published by the Mayo Clinic Proceedings. The authors spend a good bit of space debunking the "placebo effect" myth of B12 treatment.
Unless you have had different tests to myself, nerve conduction tests test the large, long nerves in your arms and legs. It’s good news if these are normal. The Emg tests your muscle function. A spinal and brain mri looks for nerve damage in your central nervous system. If these tests are all normal that’s good news but by process of elimination probably means you have small fibre neuropathy which there isn’t a test for that is done routinely and that can cause parasthesia symptoms. I’m not a medic but this was what my neurologist told me. B12 deficiency and many other conditions can cause small fibre neuropathy. You may have had other tests done that rule that out as well.
I am not the best at modern technology so afraid cant put link up...... but if you google demyelination or even peripheral neuropathy you will see from numerous charts a list of things you might be suffering from
I just had the tests you first mention. To be honest, I think I only had them so that the GP could say, told you so, no PA! He'd been forced into a corner to treat my B12D and then told me he was ordering these tests. I felt they were more for him than me.
I don't think he believed my explanation of the multitude of tingling, prickling, sparking and buzzing that I reported I was experiencing - never mind some of the other weird things happening to me that he clearly thought were all my mind. Yet I was totally lucid and telling him that I knew these things sounded weird, because they really were. Nonetheless, they were what I was experiencing and I'd eventually plucked up the courage to tell him, knowing full well how I was likely to be viewed. It's a shame I was proved right about that. But I got treatment and the start of my recovery, initially a huge onslaught of more tingling in all manner of places, began, so for that I'm grateful.
I was interested in the nerve conduction studies results given that I have a longstanding leg injury from falling down a whole flight of stone stairs a large number of years ago. After that I was told that I had nerve damage, which was the cause of all the problems with it. Seems they got that wrong then because she tested right on my injury site. Good job that I turned down the offered surgery on the nerves way back then! I was also told that I would get varicose eczema there, whatever that is, but not noticed it yet...
I had nerve studies, probes on feet brain arms etc.,Messages not getting from feet to brain, hence falling over. I did adapt at the time... just had to rise a lot slower. So would start out feet on floor ,with help of furniture I would hold on too, to gently rise in stages until I could stand. Eventually getting treatment I dont even think about it now.
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Help with B12 and PA diagnosis? In UK
To many problems plus gaining weight
