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HELP!! b12 deficiency, small fibre neuropathy and dysautonomia

Amyflood246 profile image
10 Replies

hi! I’m sorry me again!

So I have breathlessness, bladder problems, excessive sweating, very high heart rate especially on standing, dry mouth, dry eyes which are all a symptom of dysautonomia/autonomic neuropathy

So what I’m wondering is… I know b12 can cause small fibre neuropathy which can then cause dysautonomia… BUT can you have the dysautonomia caused by the small fibre neuropathy but not have the usual sensory symptoms of the smal fibre neuropathy such as numbness, pain etc in the feet legs and hands? So basically can small fibre neuropathy cause dysautonomia independently from other symptoms of small fibre neuropathy

also can the small fibre neuropathy caused by the deficiency cause POTS?

Thank you so much for any help! X

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Amyflood246 profile image
Amyflood246
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10 Replies
Nackapan profile image
Nackapan

Yes.My daughter has POTS from undiagnosed b12/folate / iron deficiency for many years.

Amyflood246 profile image
Amyflood246 in reply toNackapan

does she have any other symptoms of dysautonomia? X

Maudsnorts profile image
Maudsnorts

This might sound completely out there, but has your neurologist ruled out myasthenia gravis? I had similar symptoms which cover a multitude of autoimmune diseases, but having caught Covid, these were exasperated and I was admitted to hospital several weeks later having an MG crisis. POTS was always there in the background and has been a bit of a red herring, along with my PA and underactive thyroid, but autoimmune diseases are almost like a chain reaction, ask your neurologist to test for thy series of autoimmune diseases, so that you can get the right treatment started asap.

Amyflood246 profile image
Amyflood246 in reply toMaudsnorts

to be honest my neurologist has been absolutely useless! He tested my reflexes and said I was fine! I told him i disagreed so he agreed to do a nerve conduction test but said the results will probably be fine so it’s unlikely I will see him again!

I have lots of autonomic symptoms such as breathlessness, very high heart rate, bladder issues, excessive sweating but I also have other symptoms such as brain fog, muscle twitches, body feeling like a dead weight, forgetfulness, irritability, cuts in the corners of my mouth and a sore tongue. My lowest b12 result was 190 so im guessing it’s highly likely that, although GP wouldn’t treat because it was just about in range so im having to treat myself!

Can I ask what your exact symptoms of myasthenia gravis were please? X

Maudsnorts profile image
Maudsnorts in reply toAmyflood246

Fatigue, loss of muscle mass, double vision, tremors, fallsWhen you have a crisis the antibodies have stopped your muscles properly. Classic signs,droopy eye lid, slurred speech, head falls forward onto chest and you can't raise it back, can't lift arms over head, difficulty swallowing, breathing becomes difficult if your at this stage you will be taken to ITU. The good thing is that this is recoverable, and you may only have one in your lifetime.

Maudsnorts profile image
Maudsnorts

Oh and the nerve conduction test is not one I would willingly undertake, ask for the blood tests first

Amyflood246 profile image
Amyflood246 in reply toMaudsnorts

thank you! The only symptoms I have that you mentioned are fatigue and visions abit blurry but not that noticeable. Why wouldn’t you want to have the nerve conduction test? X

Maudsnorts profile image
Maudsnorts in reply toAmyflood246

It's very painful an electrical current is increasingly passed through your arm to assess what nerve damage has occurred, where the impulses stop and are plotted on your arms, legs etc

Amyflood246 profile image
Amyflood246 in reply toMaudsnorts

can it sometimes miss nerve damage? X

Mixteca profile image
Mixteca in reply toMaudsnorts

That sounds scary! 😱

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