Oh dear, it's her again! : So because I... - Pernicious Anaemi...

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Oh dear, it's her again!

ABC852031 profile image
5 Replies

So because I had lowish b12 and neuropathy I've been having three injections a week since April, but the neuropathy is still getting worse. I've also been diagnosed with mgus which can cause neuropathy too. The thing scaring me is that I have lost 10lbs over the last six months, I'm 5'9" and currently 9 stones 3lb. Is this normal?

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ABC852031
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fbirder profile image
fbirder

From this jnnp.bmj.com/content/63/2/163 it seems as if a neurologist should be able to distinguish between B12 and MGUS neuropathies with some nerve conduction studies.

ABC852031 profile image
ABC852031 in reply tofbirder

Thank-you. It's starting to look as if continuing with B12 injections is just masochism! I did see a neurologist a while back. He did a brain MRI and an EMG and diagnosed idiopathic polyneuropathy. He told me that there was no need to continue B12 after the loading dose and that low IgA, IgM Kappa migrating in the mid gamma region and the presence of paraprotein were "probably not relevant". Trouble is that by the time I get to see an NHS specialist.....

fbirder profile image
fbirder in reply toABC852031

Did the neurologist make any predictions as to how your neuropathy should progress?

I got told mine was IAN - Idiopathic Axonal Neuropathy. He said that it normally increases in severity quite quickly then it slows down. He was spot on. It’s been stable for over a year now.

ABC852031 profile image
ABC852031 in reply tofbirder

No, just come back in six months and we'll see how much worse it is. For a number of reasons I didn't feel he brought his A Game.

fbirder profile image
fbirder in reply toABC852031

Determine the progression is an important diagnostic tool. Unfortunately there are a lot of causes of peripheral neuropathy (my book lists more than 80), many of which look just like some of the others.

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