Hi everyone. Recently I underwent a n EMG (electromyograph) and Nerve Conduction Study to verify the nerve damage since I’m having symptoms of peripheral neuropathy. Both studies were normal. Have any of you underwent such study to confirm peripheral neuropathy (nerve pain, muscle weakness) due to Pernicious Anemia? What were you’re results? Do you suggest other nerve studies?
Thank you!
I didn't have those specific tests, but others, and the neurologist was a bit surprised that they weren't more conclusive considering what I said and how I appeared to him.
He concluded that the daily injections were working and I was improving so said "no change in treatment" and few days later my Dr's surgery reduced them to 1 per month so I have bought my own since.
I did have those these and the results were unequivocal - my axons (long nerves in the limbs) aren't processing sensory information. But it wasn't due to B12.
If you have small-fibre neuropathy then nerve conductions studies can show normal results -
Electromyography and nerve-conduction studies are well-established neurophysiologic techniques used to assess the integrity of larger myelinated sensory and motor fibers. These studies often are normal in pure small fiber neuropathies. If there is question of possible larger fiber involvement causing symptoms or occurring concomitantly with a small fiber neuropathy, these studies can clarify if larger sensory and/or motor nerve fibers are involved.
ncbi.nlm.nih.gov/pmc/articl...
That paper also lists possible causes. Most cases of small fibre neuropathy are caused by diabetes or pre-diabetes. But it lists over a dozen other possible causes, and says that is an incomplete list.
Could b12 deficiency cause the small fiber neuropathy? Ill inquire to my neurologist about it.
After my normal results my neurologist concluded I may have a mental disorder that affects function of nerves but it may just be small fiber neuropathy.
Yup.
After diabetes, B12 deficiency is thought to be the most common cause of small fibre neuropathy. A skin biopsy can help determine if the problem is SFN.
link.springer.com/article/1....
I had both nerve conduction studies and an MRI of my spinal cord. Neither test showed nerve damage. However, my husband, a retired Neurophysiologist was not unduly surprised for two reasons. Firstly, there is in theory a whole spectrum of severity of metabolic neuronal impairment and neither test is especially sensitive before permanent damage occurs. Secondly every sensory pathway has a peripheral and central element. The processing of sensations can also be affected centrally within the brain. The eminent Neurophysiologist who performed my nerve conduction studies in London, agreed and wanted to know how my condition progresses. In reality, I/M B12 injections have resolved my peripheral sensations.My husband is keenly interested in what test results will be reported in patients with long Covid. He is hopeful that resources put into research in this area will result in further developments in MRI signal processing and imaging that will demonstrate detectable CNS changes in both Long Covid and B12 deficient patients.
Hi I have had a MRI scan 2 years ago I had discs resting on nerves, I have the same tingling in hands & feet constant pain, weakness struggle to get upstairs, simple jobs like house work struggle feel like I'm climbing mountains everyday. Just read about B12 deficiency can cause nerve damage, also can be irreversible if let untreated, you feel like lying if results come back OK, I would keep pestering dr's to get sorted, glad someone else feels same. Have you had any lower paralyses I have it bout every 3months, my sciatic nerve is my problem, what about you.
Hi no I haven't had any tests done, but wud b interested. I have nerve damadge to lower back I also take pregablin, only recently found out that B12 def is associated with nerves damadge. Was told by my Dr this year that I shud never have been taken off injections from previous Dr's thats been a least 5yr's +. Does any 1 else take tablets for nerve damage & also painkillers.
You should look into the test. I don’t take any because my nerve study came back normal hence not needed.
Yes, I need to take gabapentin (similar to pregabalin) to keep my nerve pain bearable. Ordinary painkillers (aspirin, paracetamol, ibuprofen, etc.) are no good for neuropathic pain.
I used to have to take codeine a few night a month when the pain got too bad, but no longer need to since I started taking alpha lipoic acid (3 x 600 mg).
Hi, I had both done plus MRI. Was told that all was normal. I have numb tingly feet, fingers and face. Also have balance issues mostly in the dark or with eyes closed but neurologist refused to do any PA specific tests with balance as my B12 levels were normal . Apparently I was sent to rule out MS, which was news to me at that time. Hope this helps, even if just a little.
Has your neurologist performed other tests to explain your nerve problems ? I’m puzzled by how I feel nerve issues but my tests came out normal.. it’s strange.
My neurologist washed his hands of me after these tests, this was about 8years ago before the BSH guidelines came out warning of the problems with current blood testing. Doctors won't refer me back because they still think it's all in my head. Currently got a formal complaint in to my GP.
I havent had that test but have had postural tremors (diagnosed as Orthostatic by a NHS neurologist) and perpheral numbness for years, developed low B12 level (275) . B12 injections daily improved these but I then deterioated after a couple of years finally developing abdomeny pains, diarrhoea and horrendous indigestion. Going gluten free has really helped to settled many of my symptoms including incontinence and blurred vision. This is a work in progress as have been gluten frre for only 6 weeks but feel so much better: indigestion, diarohea, pain, blurred vision gone, incontinence 90% improved and tremors have settled so now very fine and occurring only mildly in one leg and opposing arm. I know ai shouldve got myself referred but in a pandemic I knew Ai wouldnt be seen fpr many months.
I do wonder if gluten intolerance is often not considered if you present with neurological symptoms first. Dr Sanders & Proff H in the UK have done some amazing world acclaimed work on this if you want to look them up. Sadly it hasnt yet filtered down into Neurology Practise never mind at GP level. In your shoes I would consider Gluten Intolerance -a recognised medical condition which is different to Coeliac.
Apologies for the errors but the efit button no longer worls s cant correct!
Edit! 😩🤣😂
Heartening to hear you have found so much improvement - you had a really hard time getting there.
Thanks Cherylclaire. 😀
Gluten intolerance isn't really a thing. The scientist that first described it did an experiment -
He took a group of people who said they were gluten intolerant, but didn't have coeliacs. He fed them one of two nutritional bars - one containing wheat, the other without wheat. Then they swapped over, so the ones who had the wheaty bar had wheatless, and vice versa.
They suffered much worse effects from the wheaty bar. Hence they had proved gluten sensitivity.
But he was a good scientist. He realised it may have been something else in the wheat, something called fructans - a type of FODMAP (Fermentable Oligo-, Di-, and Monosaccharides And Polyols).
This time the volunteers were given bars that contained - gluten and no FODMAPs, FODMAPs and no gluten, and a control containing neither FODMAPs nor gluten.
These people with non-coeliac gluten sensitivity had a better response to the gluten bars than to the control. The FODMAP bars provoked a response the volunteers adcribed to gluten.
newscientist.com/article/21...
So it's likely to be FODMAPs that cause a problem, not gluten. It's worth checking out if FODMAP-rich foods provoke a response in you. Because going FODMAP-free can be a lot less restrictive than going gluten free. For a start you can eat real bread - as long as it's sourdough (because the preparation involves fermentation of the fermentable carbohydrates).
healthline.com/nutrition/fo...
Absolutely not true fbirder. It is recognised by the NHS as a separate condition. I suggest you look it up on the NHS website. In my area we have two world experts on the subject. Both work for the NHS. Look up Dr Sanders and Proffessor H (sorry cant spell his surname) they have both done extensive recognised reputable research on this.
I'll bet they are from Sheffield.
The neurologist I saw at the National Hospital for Neurology and Neurosurgery in London said that nobody can replicate their experiments.
Probably be best to start a separate post to debate this fbirder?
You havent explained why the NHS recognises the condition if it is considered so dubious by the medical fraternity? Surely they wouldnt recognise the condition if its based on such flimsy evidence that your neurologist alleged. He/she need to substantiate their claim with substantial proven research.
Fodmap is not what I need to do presently. I have no issues eating grains with the gluten removed and it has been a joy to be able to reintroduce grains that I stopped eating several years ago and not have tummy ache or horrendous indigestion. I happily eat the other foods mentioned in the Fodmap process.. Frankly Excluding foods from Fodmap can be harder to follow not easier depending on what foods you are sensitive to. So unless I find myself deterioating again despite the gluten free protocol I see no need to implement the rigours of a Fodmap assessment. Thanks though.
Because the NHS are behind the times.
Five years ago non-coeliac gluten sensitivity was a thing.
Fbirder I suggest again that this is opened in a separate post as we are way off topic to the original post. My apologies to Dolensan.
I ask again that you substantiate your claim that it is 'a thing of the past' by submitting recognised consistent research so we cam all learn but in a seperate post. On pub med it shows recent research into the problem so am now confused. My problem is definately to do with gluten -as far as Im aware I do not have celiac. Thanks.
newscientist.com/article/21...
Or, for one of the many papers casting doubt on non-coeliac gluten sensitivity -
A major problem defining gluten sensitivity in patients with putative noncoeliac gluten sensitivity (NCGS) is the accuracy in the attribution of symptom induction to gluten in food. In those with self‐reported NCGS, there is currently little evidence of gluten‐specific induction of symptoms in randomised blinded rechallenges. The rate and severity of symptoms associated with ingestion of sham/placebo have been overall similar to those following ingestion of gluten in several randomised controlled trials.1-6 The study of Daveson et al7 in this journal provides insight into symptom induction by gluten in patients with coeliac disease where specific immune reactions to gluten are not in question.
Just to add that I am unable to eat bread whatever form including sourdough or grain cereals if they include gluten as it induces the same reaction. Believe me if I could avoid being gluten free I would do it. Ive spent many years trying Wheat free etc. My cousin cant tolerate yeast. For the first time in years I have been able to eat a cereal (gluten free) again without horrendous indigestion. I had given up eating cereals for breakfast several years ago. I know FODMAP programme is the go to thing these days but in my case it is gluten as I developed neurological symptoms which have improved.
The edit button isnt working so had to post this separately. Lol....
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