Can B12 deficiency cause all these symptoms/signs?

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GaborBP

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Hi,
I'm a realtively old member of the DIHALS forum, so I'll try to be as straightforward as possible to recap the basics:
My father passed away from PBP at the of 56. No other family member had MND, and he encountered both head trauma and large amounts of diesel exhaust.

I've had widespread fasciculations in the last 3 years, and received a dirty EMG in September '17, including in the dreaded thoracic paraspinals. The EMG doc straight up declared that "what if I told you that you had the same disease as your father? You wouldn't be able to do anything, would you?" However, my primary neuro (his boss) doesn't believe it's ALS.

In the last 6 months, I've been experiencing swallowing problems, which are slowly getting better.

The interesting part is that it was revealed that my B12 level stands at 77, while my iron level was first off the charts, then dropped to the lower threshold in 2 weeks time. What's more unnerving is that is have slightly low ceruloplasmin with high free copper - which is an ALS biomarker.

My question is: is it possible for a predominantly UMN disease like B12 deficieny to mimic a full blown LMN dominant ALS? I've never heard of it attacking anything else than the legs. Also, what about the iron? I'm aware that ferritin is high in PALS, but this is serum iron.
 

KarenNWendyn

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How about finding the cause of your B12 deficiency and correcting it, or at least getting your B12 levels normalized.

With iron, it’s the ferritin that reflects iron storage, so we get concerned about iron overload if the ferritin is high. If it’s normal, you probably don’t have excessive iron stores.

B12 deficiency can cause a peripheral neuropathy with sensory symptoms (numbness) along with degeneration of the dorsal and lateral columns of the spinal cord. Lateral columns affect spasticity.
Paraplegia has been reported in advanced untreated cases.

Here are some of the other neuro/ cognitive manipulations of severe B12 deficiency:
●Depression or mood impairment

●Irritability

●Insomnia

●Cognitive slowing

●Forgetfulness

●Dementia

●Psychosis

●Visual disturbances, which may be associated with optic atrophy

●Peripheral sensory deficits

●Weakness, which may progress to paraplegia and incontinence if severe

●Impaired position sense

●Impaired vibration sense

●Lhermitte sign, a shock-like sensation that radiates to the feet during neck flexion

●Ataxia or positive Romberg test

●Abnormal deep tendon reflexes

●Extrapyramidal signs (eg, dystonia, dysarthria, rigidity)

●Restless legs syndrome
 

GaborBP

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I've already had two 1000 microgram loading doses of B12 shots, the problem is that they don't seem to help with anything else than giving a temporary relief from some heel and ankle pain
 
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lgelb

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It would quite likely take more than two injections, even loading doses, to produce significant clinical benefit for a longstanding deficiency (and B12 deficiencies are not uncommon).

Nor am I sure we can label B12 deficiency as causing "predominantly UMN" symptoms given the wide range of CNS manifestations, including weakness.

The fact that your swallowing has improved argues against neurodegenerative disease. I would keep working on the B12 deficiency, look for primary causes of this or any other imbalances (not all of which are always readily discernible from labs; a nutritionist would know more about concomitant risk factors to consider/treat empirically with diet, etc.) and fix those, and go from there.

Best,
Laurie
 

KimT

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1,000 micrograms is a pretty small dose so it'll take time to get your levels up.

You can try reducing your free copper by taking Zinc Gluconate. It worked for me but doesn't always work for all PALS.

I would have my Ferritin level checked and, if it's elevated, get your serum transferrin saturation tested.
 

lgelb

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The zinc/copper ratio is a delicate one, and both are important to nerve/muscle function, so if you're going to tweak it, I would do so under professional advice, not as a result of one blood level that could easily have been influenced by other issues.
 

KimT

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I agree. I do mine every six months.
 

mnatale

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we have had excellent results correcting deficiencies with the help of a naturopath. many doctors will prescribe you high doses of whatever it is you’re lacking, but it won’t make a bit of difference if something is preventing your body from absorbing and using it. in our experience, MDs have extremely limited knowledge in nutrition and related issues. imho, even traditional nutritionists have limited knowledge of how your body actually work and what it needs to heal and be healthy. #RantOfTheDay
 

lgelb

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Not to play the curmudgeon but naturopaths vary widely. If you go that route, choose wisely.
 

GaborBP

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I've had my ferritin tested, it went up to the upper normal region (around 220), when iron dropped to the lower limit. I was wondering if this was perhaps related to an acute infection? Also, I've read that vitamin C and certain other vitamins can mess up your iron and copper metabolism in the long term. I've been taking 1000mg vitamin C daily, 400 IU vitamin E twice a week, and 100 mg Q10 daily for about a year now. In your opinion, could these cause issues (not necessarily serious ones, just false readings)?
It should be noted that these vitamins were recommended by my neuro as "health boosters". She's no "vitamin peddling" quack, and agrees that I have something going on, but doubts that I'm going to develop an MND
 

KarenNWendyn

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Ferritin is an acute phase reactant, which means it increases with acute inflammation. Infection can cause inflammation, so it can raise the ferritin level.

Vitamin C can alter iron and copper metabolism, but you’d have to take a lot of Vitamin C to effect any significant changes.

As motor neuron disease is not likely in your case, I’d recommend you discuss your concerns with your neurologist and with an internist.
 
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