Sticky Blood-Hughes Syndrome Support
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nerve conduction study says no peripheral neuropathy?!

Hello nice people!

I'm in the UK....

I have quite a complex health history which at the moment is confusing even the professionals so any extra help or past experience fom others will be of great help.

Better still....if any of you are doctors!

Amongst other issues which could be causing my many and varied neurological symptoms, I have vitamin B12, folate and Vitamin D deficiencies.

All of that is under investigation and I don't need any help with that thanks....buuuuuttttt....... I recently had a nerve conduction study on my hands which surprised me when I went for it as I have pins and needles in hands, feet and saddle area, as well as electric shocks, pain, burning, vibration distortion etc etc.

I really thought they should have tested the other areas too!

The report came back saying I have NO peripheral neuropathy but surely just testing my hands isn't a full and exact test - enough to exclude peripheral neuropathy!

How do I get the legs and saddle area tested too now?

Can I insist?

The report also said that I asked for the needles to be taken out in part of the needle testing of the study.

This is, to me, an inaccurate account of what happened and why.

I didn't ask for the needle to be taken out....when the needle was inserted into other muscles in both arms, it was fine, but when it was inserted into another muscle, the same one on both different arms, it was absolute agony and the needle was immediately removed.

Surely this should have been written into the report as a more accurate account of what happened.

One account means I'd had enough of being poked and prodded, and the true account could possibly have made a doctor aware that the muscles causing that severe pain may need further investigation.

What should I do?

Thanks in advance and sorry for the lengthy post. Xxxxxx

3 Replies

Hi there, my first question has to be, do you have a diagnosis of Hughes Syndrome/APS? As this is a forum for this medical condition. However if you are wishing for more help with vitamin B12 deficiency I can point you in the right direction. pernicious-anaemia-society.... I have heard the chair, Martyn Hooper speak, he is very very good, and has written a very user friendly book also. There is also a good group on Facebook.

It is important to sort out your vitamin D deficiency.


Reply, sorry. I'm trying to get my head around using this site.

I have never posted or replied to any posts before so don't know what I'm doing.

So sorry. Xxx


No problem if you look at communities and trawl through you may find what you are looking for, other than what I suggest, also check your thyroid as well. Hope you land in the right place. MaryF

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