Pernicious Anaemia Society
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Hi

I am new to this site, my symptoms have been tiredness and involuntary muscle twitching (drives me mad)......I have had a blood test and have been advised over the phone that I have vitamin b12 deficiency..I am having injections every other weekday for 2 weeks then will have to have another in 3 months time....

I have had no other information, when asked gp on the phone whether it's all connected i was advised he did not think so and how interesting it all was.

Obviously not much help at all.

Does any one on here have neurological symptoms from b12 deficiency. I am to book to see gp after my jabs for some information....

I have read on various site that you can suffer neurological symptoms.

Take care all.

Natalie

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Dont worry.You are not alone.I also have muscle twitches.How frequent are your twitches and in which parts of body?What are other neurological symptoms?

Check your vitamin D level as well.

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I have had involuntary muscle twitching for months and did not really think much about it.....I then started to get the twitching in my thumb this would twitch on and off all day, it drove me mad, I finally went to see my go who was clueless and asked me lots of questions especially about epilepsy.

My thumb finally stopped twitching all day a week before Christmas......I suffer twitches all over my body, legs ,arms, toes, fingers, occasionally head or main body....They have lessened since having i injections ( i have had 2 in my leg since typing this)....worst time is whilst driving or in my thigh as my leg gives way for a 2nd..It's my last one tomorrow and I will be booking to see gp, to see why I have b12 deficiency ect and to ask questions....this site has been really useful

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What a well timed post! I can't stop twitching my foot tonight! I've always been a leg/foot twitchy person when I'm cold (which I am & have been for 2 weeks!), but tonight I'm going non-stop. I'm new to PA and got my first injection early this week. I've got a weird loading dose set-up for me, jab every 3 wks. for 6 mths., & test at 3 & 6 mo. Anyways, I was going to argue Mon. w/my GP for more often at the beginning as I've heard people get a lot more in the first two weeks, but the twitching had me worried that maybe I had a lot of B12 in me already. I hadn't read that twitching can be a symptom? I do have other symptoms, mainly vertigo & paresthesias (tingling) in hands & feet.

Natalie good luck in your start-up and info find! I have found a lot of information on the PAS site. I became a member and then got access to all their info. Also, this blog and PAS FB support group are great. I also just googled exact questions and sometimes got some info that way. Also, there are a few books on Amazon about PA/B12 deficiency. Learning the info at least makes you feel more in control! I do know that the tingling I got, as well as, my vertigo are both considered neurological symptoms, but I can't remember the rest. Oh yeah ;) brain fog. I got that one too!

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Hi Natalie99999 Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

Weakness and fatigue

Light-headedness and dizziness

Palpitations and rapid heartbeat

Shortness of breath

A sore tongue that has a red, beefy appearance

Nausea or poor appetite

Weight loss

Diarrhoea

Yellowish tinge to the skin and eyes

If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

Numbness and tingling in the hands and feet

Difficulty walking

Muscle weakness

Irritability

Memory loss

Dementia

Depression

Psychosis

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

You really need to find out why you have become deficient in the first place.

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Do you see yourself amongst any of the above people?

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

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It is amazing just how unaware GPs are of the full range of symptoms of B12 deficeincy. They tend to think it is all about anaemia but B12 is actually used by a number of systems in the body and 25% of people present with neurological problems rather than any form of anaemia.

If your GP is amenable to finding out more about this 'interesting' condition then you could point him at the following resources

a) BCSH guidelines on diagnosis and treatment of cobalamin and folate disorders which they can access through the BNF but can also be accessed here (assuming you are UK based)

onlinelibrary.wiley.com/doi...

b) PAS website pages specifically targetted at medical practitioners

pernicious-anaemia-society....

You have neurological symptoms so ideally the treatment should be more aggressive - with your loading shots continuing as 3x weekly until symptoms stop improving (review at 3 weeks) and then maintenance ever 2 months)

You may also find it useful to keep a diary of symptoms using this checklist

pernicious-anaemia-society....

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Hi Natalie99999 and kngswim. It always amazes me when I hear about discovery of PA, lack of loading shots and treatment. I guess it depends on if its PA or temp b12 decifency, where you live and what your docs believe. I feel anyone with PA should get daily loading shots then weekly after that. It drives me crazy that docs get levels up to a normal range then want to reduce injections. Don't they realize that the levels are only up because of consitant injections?!?! Also they don't seem to realize the symptoms especially with Neuro, we need early, aggresive and constant treatment. I guess they think it's just a simple vit defenceny and no big deal. I wish the medical community would get better educated in PA, it's symptoms and treatment

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