Why is this so difficult to figure out

[Meblue]

I’m reading a lot about first symptoms of b12 deficiency and it’s so confusing because it seems like everyone presents with different symptoms. Like it talks about the first symptoms being tingling in the hands and feet and the the tingling moves up the legs in a stocking and glove pattern with the hands going numb first and then the feet. Then it moves up the legs. This has not been my experience at all - this all started with all over strange feelings in my legs and my feet were not affected nor my hands or arms. I wish this disease had clear cut symptoms that happen in order - no wonder people can’t figure out what is wrong with them.

[TACCT]

Yes these differ from person to person and I think it depends upon which set of nerves or bodily systems were affected first. Since human body depends on nervous system for so many functions so you are never sure where it all started. Usually in early stages, the nerves most likely to be affected are the longest ones, i.e. the ones that go to the parts of your body furthest from your brain, in other words the nerves in feet and hands, which is why this often shows up in feet and hands. On the other hand in some people their hormones go haywire which manifests itself as depression, fatigue or other symptoms.

[Meblue in reply to TACCT]

I would have preferred the depression and fatigue! Of course, I have that now too because of all this with my legs, so I guess it all adds up. This just stinks.

[deniseinmilden]

As your levels are 560 they, more than anything else, suggest that your neuropathy is probably caused by something other than B12 deficiency.

Even with supplements it is unlikely that your B12 will be as high as this if you have a significant absorption problem - hence why injections are essential.

Have you had your folate, vitamin D, potassium and sodium levels tested?

Have things like MS, diabetes and other conditions that cause nerve damage been ruled out? I think it is important that these are tested for and conclusively eliminated first as you may be missing out on treatment and support.

Everyone is different and becomes affected in different ways but usually people notice the fatigue and brain fog from B12d before their limbs are noticeably affected.

[Meblue in reply to deniseinmilden]

I had my vitamin D checked and it was 33-normal and my folate was 12.9 which is also good. I don’t even take any supplements or multi vitamins which is why I’m surprised all my levels were this high. I do eat quite a bit of fortified food like cereal, but I still am kind of surprised because my depression has made my hunger completely diss appear. I’m not sure how my b12 is this high. I guess I’m going to have to pursue other things - Diabetes would completely shock me as I weigh 110 pounds and have my whole life and before a couple years ago I was a marathon runner and endurance athlete my whole entire life. Maybe MS is possible, but this came on so suddenly and I always thought MS took many years to progress.

[deniseinmilden in reply to Meblue]

It's really curious isn't it? I do feel for you - especially when you have had such a great body, it's a real shock that's hard to come to terms with when it suddenly stops working properly.

You are not alone - you have found a great group of people here who have a huge amount of experience and knowledge between them.

I'll keep thinking!

If you have had plenty of fortified food your levels aren't particularly high - just higher than would be expected if this was a slow onset problem due to a long term malabsorption issue.

When you have ruled out other reasons for your neuropathy it could be worth trying B12 supplements to see if they help as they won't do you any harm.

[deniseinmilden in reply to deniseinmilden]

I was thinking more of type 1 than type 2 diabetes but I don't know much about it - I was just trying to think of anything else that could cause your neuropathy - not because I doubt you possibly having a B12 deficiency but because I wouldn't want something else to be missed. I believe it is important that you get the appropriate treatment ASAP.

[fbirder in reply to deniseinmilden]

I have a couple of books on Peripheral Neuropathy. They list over 80 possible causes. It really needs a neurologist to decide which it might be.

[fbirder in reply to Meblue]

It is possible to get diabetes in adulthood that isn't Type 2. LADA is an autoimmune disease that can strike in later life. It's sometimes called Type 1.5

diabetes.co.uk/diabetes_lad...

[deniseinmilden in reply to fbirder]

Thank you.

[Meblue in reply to deniseinmilden]

Thanks for keeping me in mind.