B12 Neurological damage

[graham]

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 (inflammation) problem  

Would additional tests, MRI or otherwise be helpful. I am in Scotland. If necessary, I would have tests elsewhere.

Many thanks again
Graham

[CCF-Neuro-M.D.-PW]

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

[dadio]

Hi Graham, glad you have finally been diagnosed.  I too have small fibre neuropathy (idopathic) and wonder if I can ask a few questions.  I live in London and have had every test under the sun - the only one positive is for sensory neuropathy and at first my feet burned and tingled constantly but it has not spread all the way up the legs to the buttocks.  The thighs seem to cramp too.  Tell me are you intolerant to heat ie. baths, sun, exercise etc.?  All these things make mine much much worse.  Are you on any medication at the moment.
Thanks Pauline

[keeponsmilein]

Graham, im in scotland too, would recommend you ask to be referred to Western General in Edinburgh. They have an excellent dept of neurosiences. I speak as an ex patient.Would ask for an mri of cervical spine with contrast,I know we scots dont like to ask for these things we are usually told ha ha ha!Try to get to see Patrick Statham, I owe that man my life. Hope you feel better. We spoke on here a few years ago I was zoltanvarga ( forgot me password!!) and you helped me a lot . Take care. Anne

[graham]

Hi Pauline, the tingling and burning I have started in my lower legs and feet, but I can also feel it in my upper legs. I do understand about the cramps, apart from legs, I get it in my left hand on the outside (heel and small and ring fingers) where there is also muscle loss. It's strange, I have to watch even when I yawn, as I can get cramp there also. I have tightness in my face muscles also.

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

[niceguy1977]

Graham,

for how long did you experience the damage? Most people says that recovery is cyclical.

[graham]

Hi Niceguy

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

[niceguy1977]

Hi 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

[joeybubbles]

Hi Graham,

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

[graham]

Hi Joey

My b12 level was at the lower end of the normal scale for a long while before tipping into the deficient range.

What I now know is that low normal and/or borderline b12 levels can, for some people, be just as damaging.

My first level taken back in 98, when my symptoms were quite light in comparrison to those I have now (slight tingling/burning feet, balance problems, slight tinnitus and mild fatigue) was 289 pg/ml with a normal range of 155-1100 pg/ml.

My doc also said this was quite normal, and maybe for some people it is, but I was obviously effected at that level. Subsequent levels taken over the years, all nearly without exception, fell untill in 2003 I was deficient, but only just. Although I am on treatment for life, I have constant tightness and discomfort in my leg muscles and feet. Tingling/burning in legs and arms, tightness in face, loud tinnitus, definite memory problems, and other symptoms.

If I had seen a doctor back in 98/99 who had a better understanding of b12 deficiency, and the levels it can cause terrible damage, I don't think I would be struggling with the symptoms I have now.

I would ask them to retest your b12 level, and if it is still low normal (you are in the bottom 15% of the normal range on your last test)then ask for further tests of homocysteine and methymalonic acid. Chances are your doctor has not even heard of these, but they are available. If you are suffering from deficiency, chances are that both, or one of them will be elevated.

Please ask anything else that comes to mind.

Good luck
Graham

[TTITTLEMOUSE]

Hi

I was diagnosed with a b12 defficiency 150 on the range quite low.

I was administered injections which helped a little.

My symptoms include electric tremor down my back to feet. Burning,itching and numb sensative hands. My hands are worse and very uncomfortable and difficult to type.I also had a numb band around my back and waiste.

I went for an MRI Scan and they found something on my spine, they have now diangnosed me with MS. They are sending me for further tests to check. But low b12 can be found in MS as well as many other illnesses.

[zimm]

I have been fighting my idiopathic neuropathy for about 9 years and have always had 'normal' B-12 levels.

Three months ago with a new doctor I started B12 shots even though I was taking 2000 mcgs of subligual/day.
The doctor laughted at that and put me on 1000mcg shots per week as well as take me off of diltiazen.  I had an almost instant improvement with the symptoms and stiffness.

I am now down to 500mcg shots (that's a stab in the UK)  per week.  The dr. put me on 1000mcg every other week but at the end of the second week I could tell I needed the shot.  So I halved the dose and now give myself  half per week.

B12 is a not the cure but I feel it is helping with the pain and there is improvement in the ankles.  My neuropathy is still progressing into my hands regardless what I do but where would I be without my B12?

From experience I feel there is an inflimation element to my nerve problem as asprin really helps me, but I can't take it.
Also I have found carnitine has been a great help and I am working upward on the dosage hunting for a point where I can see an umprovement, but have to watch that and take it slow because it does elevate the blood pressure.

Good luck with the B12.

[grandpa5]

A related discussion, tingling, pain, burning, swelling of hands was started.