Amyotrophic Lateral Sclerosis (ALS) Community
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Avatar universal

B12/ALS quer

I'm 35 years old and recently diagnosed with low B12 (60).  

I had several symptoms, fatigue,. breathlessness, palpitations, tiredness (ache) in my feet and especially hands,  as well as some numbness in my fingers.  These had gone on for a period of years (less so the fatigue).  I am also about 60lbs over weight.

I had a course of 6 injections in 6 weeks and my B12 is now 900 and I feel markedly less fatigued.  The palpitations and breathlessness have remained but the ache and numbness in my hands and feet have seemed to actually gotten worse.  Perhaps I am just more aware of them?

They now feel almost clumsy, tingly and weak, not markedly or debilitatingly so but definitely worse.  I had put everything down to the B12 deficiency but my doctor is discounting this as a cause and sending me to a neurologist and a cardiologist.

I have now gotten myself into a panic that the symptoms match ALS.  I know its not possible to say anything definitively but is there anything that I can test myself on to put my mind at ease while I await the neurologist.

Could my doctor be wrong and a longstanding B12 deficiency have caused the problems, or would I have begun to have seen an improvement rather than a perceived deterioration at this stage.  I began treatment about 3 months ago.

Any information would be appreciated

4 Responses
Avatar universal
Just one other comment - after reading up on ALS/MN I see that muscle twitches are common.  I get pronounced twitches in both calfs, and sometimes quads very regularly.

Again, anything that might help put my mind at rest would be great.
1756321 tn?1547098925
I'm not an expert on ALS but i do know vitamin B12 deficiency is a mimic of this disease. And your vitamin B12 wasn't low, it was severe!

"In severe deficiency, there is actually a degeneration of the myelin shealth. The stuff begins to literally erode." - John Pinto, Ph.D on vitamin B12 deficiency.

It was about a year for the numbness in my arm (my entire arm and hand was numb) to be around 90% better after starting B12 treatment. The last 10% is permanent nerve damage.  I have permanent nerve damage in other areas as well.  The speed of remyelination depends on the extent of the damage. And there may be permanent nerve damage if B12 deficiency is not treated in time.

I have had all of your symptoms due to autoimmune pernicious anaemia (no symptoms now unless i stop my sublingual B12 spray for a few days); Hashimoto's thyroiditis (i am having both hyper and hypo symptoms and that causes every symptom you have listed from breathlessness to weight gain - not optimally treated yet); and the muscle twitching was in particular due to magnesium deficiency although hypothyroidism is a cause of muscle twitches.  

But of course there could be any number of reasons for your symptoms. Check on Wikipedia for the numerous causes of peripheral neuropathy.

From B12 awareness:

"What are the Causes of B12 Deficiency?

Decreased stomach acid
Atrophic gastritis
Autoimmune pernicious anemia
Helicobacter pylori
Gastrectomy, intestinal resection
Gastric bypass surgery
Malabsorption syndromes
Crohn’s disease
Celiac disease (gluten enteropathy)
Chronic pancreatitis
Bacterial overgrowth (small bowel)
Fish tapeworm
Malnutrition—Eating disorders
Advanced liver disease
Transcobalamin II deficiency
Inborn errors of B12 metabolism
Certain drugs
Nitrous oxide"
Avatar universal
Thank you very much for your reassurance. I was just taken aback when my GP (who I find generally excellent) discounted the B12.  I'm just very anixous now and not sure if my symptoms are getting worse or I am focusing on them.   The twitches I am certain are new.  I have over a week to the first visit to the neurologist.
Avatar universal
I realize your post is from 3 years ago but wanted to comment regarding the pain in your hands and feet.  I hope this has been resolved by now.  I'm now going through the process of being tested for B12 deficiency and have been studying up a lot on the various information available.  If you got B12 injections methylcobalamin injections are best for neurological symptoms but many use cyanocobalamin.  Read about them on this link - http://www.b12deficiency.info/b12-treatment/.

Good luck for full recovery.
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