Diagnosed wit b12 deficiency and some weird symptoms.

[Ieva1]

Hello everybody. So, I was diagnosed with b12 deficiency about month ago, some of my symptoms fit quite well with b12 deficiency, for example, tingling, numbness, pain in legs and while walking, but besides these symptoms I had severe problems with my legs, and that was main reason why I didn't consider that my health problems are of neurological kind. So, firstly I developed something similar to bulge at both of my toe balls, then bunions and limping, also very loose muscles around ankles (c - ankles?), limited ankle motion and very weird sensation around my knees ( feeling as if knees would go genu varum) and my feet get more wider. Can this be a result of b12 deficiency?? I received my results and no other vitamin is deficient. Also I had been a vegetarian for three years, my b12 level was 161 after 9 months of eating animal products.

[Gambit62 Administrator]

B12 is a very individual thing in terms of effects. Muscle weakness is a common symptom - not clear what causes that but possibly damage to nerves that control the muscles. Stiffness in joints is another common symptom.

One thing that alerts me to the need to top up my B12 is pain in my ankles when I stand up after sitting for a while and as I start walking. I had huge problems with muscles in lower back until I got my B12 levels right but it isn't something that plagues me now.

Using adenosylcobalamin has helped with improving the range of movement in my left ankle. Can't say I've experienced anything noticeable around the knees (just odd twinges that seem to be down to water retention from timing.)

Vegetarian diet may be a factor but it could also be a red-herring as it is possible to have an absorption problem as a vegetarian. Dairy and fish are generally listed as the most readily absorbed sources of dietary B12 so if you have been eating these then that would imply the problem is mal-absorption.

Are you being treated for the deficiency and if so how? Even if you have an absorption problem high dose oral treatment can work (doses >1mg= 100mcg a day) as 1% of B12 is absorbed outside the ileum which is where the absorption problems occur - but this doesn't work for everyone.

[Ieva1 in reply to Gambit62]

Yes I have been treated by ten injections with 1mg b12 daily and afterwards with B complex oral supplementation. I have improved, don't feel numbness and pain in legs at least not that intensively, but that limp and knee / ankle " deformation" is something I haven't heart to be related with b12 deficiency, and so maybe someone has had something similar happened, and if so, is it curable / treatable? Also I have been treating myself for one month approximately, and how much time does one need to heal completely if deficiency has lasted about three years? Is there permanent damage, and if so how usually it manifests?

[Gambit62 Administrator in reply to Ieva1]

B12D tends to be very person specific despite all the guidance implying that things can be neatly divided into categories and boxes. There is a huge variation in how people respond to different forms of B12, how long they retain the b12 and even what delivery methods will work for them. Even for the same person different formats can resolve different issues - adenosyl very good for range of movement in my ankle - hydroxo very good for anxiety and depression - that's my personal experience.

How long it is before things really start to improve is also a variable factor - some people don't really notice anything much for 6 months - others its reasonably quick. I noticed improvement after 6 months when I had my shots but was still going backwards until I started to treat myself 18 months after diagnosis with much higher levels than the text books said - took a few weeks for balance problems to improve and a few months for depression and anxiety to go.

It is also possible that some damage may be permanent .... and it is also possible that there is more going on than just B12, eg arthritis in joints (though also true that B12D can lead to osteoarthritis).

My tinnitus improves from time to time but has never gone away entirely and that seems to be quite a common one.

Sorry if that sounds like a cop out but the honest answer is that B12 isn't totally understood - all the variables haven't been identified and there is so much seemingly random variation in responses at the moment that a specific/averaged answer is going to be misleading ... as many of us can attest from the whole 3 months for loading shots scenario that exists in the UK.

[BethattheBeach]

Morning, Leva1. I cannot really comment on whether your symptoms are B12 related but.... my knees, ankles and feet were very sore before my B12 injections began. I had a strange gait especially in the morning and after sitting in a chair for a while. I felt I was 'walking on my bones". I was convinced I was going to need a knee replacement. I have osteoarthritis especially in one big toe but since treatment even my toe is getting better...slowly. I still have pins and needles in the extremities and a burning on the soles of the feet.

In the main, these symptoms have lessened although not entirely disappeared. I have recently been able to return to some gentle exercise and enjoyed aqua aerobics this week. I began treatment in February (B12 175 ) this year but felt every 3 months was far too long between injections so I now use a pen to needle-less inject.

One month ago, I started daily methylcobalabin for a loading dose for 1 week and now every 3 days. I will eventually reduce the frequency when I feel my neurological symptoms are under control. Within the month my progress has been much faster than during the 3 monthly regime.

Considering a level of 161 you probably have a fair way to go in your B12 treatment before you could say you have given it a good try.... one month is a very short time for recovery from such a low score.

Also, I would be asking for an endoscopy to ascertain the cause of such a low reading - looking for Intrinsic factor, Gastric Paretial Cell Antibodies, H. Pylori and celiac disease. Ask for a biopsy to be done while you are at it. This way your doctors will know what they are treating.

Did you try vegetarian diet because you felt so terrrible? If so, then I would be looking for another cause of the deficiency. You may need to prompt the doctors into action - take someone with you if you feel the Dr won't take you seriously.

Good luck. I would be patient and optimistic that you will feel better soon.

[pvanderaa]

B12D can impact cartilage in the joints.

Have you also lost weight?

Any recent pregnancy?

Why did you choose to be a vegetarian? You need to supplement with B12 orally if you don't have an issue with intrinsic factor in you stomach.

Any tests for IF antibodies?