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Neurology (Expert Forum)
B12 Neurological damage
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B12 Neurological damage
by graham, Mar 11, 2006 12:00AM
Firstly I have to thank the neurologist on medhelp who advised me that my neurological symptoms may well be caused by my vitamin b12 levels, which he described as borderline. Additional tests, homocysteine and methylmalonic acid were suggested as being helpful and indeed after being referred to a haematologist, I have been diagnosed b12 deficient and will receive injections for life.
My additional neurological examination identified a reduction of reflexes at both ankles, and brisk reflexes at knees and elbows, although I'm not quite sure what brisk reflexes indicate, if anything. Also loss of temperature sensitivity on my right foot.
Because it had been suggested to me that an MRI of spine may be useful in the case of subacute degeneration in the spinal cord, I asked for this to be done.
The MRI was only of brain and cervical spine and apparantly was normal. Would damage as in subacute combined degeneration show in this MRI, or would the thoracic spine be required.
The neurologist previously disregarded the information I was given from here, saying my b12 was normal. Now that it has been identified,some years on, as not normal, another neurologist from the same hospital seems reluctant to discuss my symptoms being connected to b12 deficiency.
I am left with constant burning and tingling in arms/legs, tightness and shakiness in legs, muscle weakness and memory seems problems. I also have a stomach/bowel inflamation problem
Would additional tests, MRI or otherwise be helpful. I am in Scotland. If necessary, I would have tests elsewhere.
Many thanks again
Graham
My additional neurological examination identified a reduction of reflexes at both ankles, and brisk reflexes at knees and elbows, although I'm not quite sure what brisk reflexes indicate, if anything. Also loss of temperature sensitivity on my right foot.
Because it had been suggested to me that an MRI of spine may be useful in the case of subacute degeneration in the spinal cord, I asked for this to be done.
The MRI was only of brain and cervical spine and apparantly was normal. Would damage as in subacute combined degeneration show in this MRI, or would the thoracic spine be required.
The neurologist previously disregarded the information I was given from here, saying my b12 was normal. Now that it has been identified,some years on, as not normal, another neurologist from the same hospital seems reluctant to discuss my symptoms being connected to b12 deficiency.
I am left with constant burning and tingling in arms/legs, tightness and shakiness in legs, muscle weakness and memory seems problems. I also have a stomach/bowel inflamation problem
Would additional tests, MRI or otherwise be helpful. I am in Scotland. If necessary, I would have tests elsewhere.
Many thanks again
Graham
Doctor's Answer
by CCF-Neuro-M.D.-PW, Mar 14, 2006 12:00AM
In cases of suspected B12 deficiency, homocysteine and methylmalanic acid are helpful in making the diagnosis. Also it is important to figure out why a person is B12 deficient - there are a number of causes, one of the most common is pernicious anemia where the body's immune system attacks the system that absorbs B12 from the gut. there are also other causes such as tumors of the stomach, bacterial overgrowth in the intestine, poor diet, problems with the absorption lining of the gut (called sprue) etc. So its not just enough to make the diagnosis of B12 deficiency and leave it there, and treat!
MRI may show some changes in spinal cord but may not. There may be atrophy of part of the spinal cord. It generally does not help in the diagnosis or treatment, and does not predict reponse to treatment. MRI is more useful in the initial diagnosis to exclude a structural cause for spinal cord dysfucntion.
The recovery from B12 deficiency may be prolonged and there may be residual deficits, particularly if there is no improvement over 12-18 months with treatment.
Good luck
MRI may show some changes in spinal cord but may not. There may be atrophy of part of the spinal cord. It generally does not help in the diagnosis or treatment, and does not predict reponse to treatment. MRI is more useful in the initial diagnosis to exclude a structural cause for spinal cord dysfucntion.
The recovery from B12 deficiency may be prolonged and there may be residual deficits, particularly if there is no improvement over 12-18 months with treatment.
Good luck
Thanks Pauline
I don't find that heat makes my symptoms worse, in fact it's the opposite. When my legs muscles are sore and uncomfortable, which is regular, soaking in a hot bath helps me.
The only medication I am on is the b12 injections, although for a short time I tried Neurontin, which might have helped marginally, and Amytriptaline which just increased the tiredness.
I hope you are managing ok just now.
Hi Anne, I do remember the name, but my memory is not so hot. I'm glad you got someone who helped you and hope you are feeling better. Thanks for the suggestion about the MRI, I'll keep that in mind once I get a reply from the Neurologist here.
It just seems incredible that I could be given such good advice from the neurologists on Medhelp, and also from a senior doctor in Florida (whom my family consulted on my behalf) both of which had real concerns that at my levels, my symptoms were linked to b12 deficiency, and yet this was completely dismissed. It was a bit like the USA V UK, and they didn't like other opinions here.
With hindsight, I should have taken up the offer from the doctor who was friend of my family, and who consulted with a neurologist on my behalf and were concerned enough to offer a full neurological investigation. Perhaps I should have considered the Cleveland Clinic also, as they were certainly open to the possibility of the possible cause, and there concerns were later justified with the identification of my b12 deficiency. Perhaps I still will.
It was nice of you to remember me Anne, and thanks for the advice.
Good luck to you both
Graham
for how long did you experience the damage? Most people says that recovery is cyclical.
My symptoms had been worsening over a six year period, before I was diagnosed as having a vitamin b12 deficiency and treatment started.
I have been on the injections for about two years now, but I can't say my symptoms, other than the tiredness, have improved.
Do you also have a b12 problem, and if you do, did you have problems getting it identified.
Graham
well I can't say if I have problems related to B12, but there are some clues. 2 years ago I was found to be deficient (values were around 150), so they gave me an oral supplement for a while. During 2005 I was checked and values were around 260 (right after the supplement were 500), so the doc gave me some other supplement to take 2 times a week. This january neuro symptoms have started (tingling, weird sensations down the spine, tinnitus), so I go checking B12 and I find it at 260 again, quite weird if you think that folate went from 4.2 to 19.1 after supplementation. So I've been taking B12 for 3 weeks. After an initial subsiding, symptoms have returned but many swear that this is quite typical, and anyway it's way too early to tell.
You can find precious info here:
http://brain.hastypastry.net/forums/showthread.php?t=57840
I was wondering what your B12 level was. I've had burning skin sensation, tinnitus, and motion sickness type feelings for about 1 1/2 years. The motion sickness type feeling I've had for several years. All bloodwork and mri of spine and brain were normal except my B12 was 311 (normal at our lab is 211-900)
My doctor said that was normal and that wasn't causing my problems. The other tests for b12 weren't done. Was your level really low or low normal?
thanks