Pernicious Anaemia Society
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EMG/Nerve Conduction Studies results for Pins & Needles

I went to the GP complaining about pins and needles in my feet and hoping for more frequent B12 injections. The surgery doesn't have anyone on 8 weeks or less and the doctor comment was that B12 and Thyroid have become popular issues which she didn't get 5 years ago and didn't know why it had suddenly become so poplar. So no luck with more B12. I was sent for Nerve con odutction test. Has anyone any experience/knowledge on interpreting the results.

A summary of the report is:

NCS - Lower limbs show delayed response left tibial nerve & small motor response from right peroneal nerve. However, these changes do not meet criteria for significant demyelination.

EMG – shows some chronic neurogenic changes in L5/S1 most likely related to mild radicular disorder but there is no active denervation to account for active radiculopathy

Repeat NCS in 6 months to look for progression of NCS abnormalities in lower limbs

If the tests don't meet the criteria for significant demyelination, does that mean I have some and need to be concerned?

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I’m sorry I don’t have the answer to your question but from your first paragraph it strikes me that your B12d is being under treated and/or your folate levels are low. The latter can be tested by your GP.

Meanwhile you can ensure that you are eating plenty of leafy green vegetables and other foods containing folate (google) and taking a multivitamin with folic acid in.

Unfortunately there is no point in testing your B12 levels as the results will be skewed by the injections you’re receiving.

If your folate level turns out to be good then I would be considering self treating my B12 deficiency. Tablets, sprays etc are not generally effective if you have PA so this would likely involve self injecting.

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My folate level was above the range max in April and I haven't taken any vitamin supplements since to get the level to drop. I had the pins and needles with the high folate level.

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I had pins and needles in my hand which have disappeared since I’ve been si on a weekly basis (as have my other PA/B12d symptoms of exhaustion, general brain fog and losing words and the thread of what I was saying mid sentence).

All of these symptoms subtly return if I’m a day or 2 late injecting (or if I’ve used more B12 having had a few alcoholic drinks or done some endurance exercise).

If it were me, I’d be looking at more frequent injections. You could challenge your doctor quoting the guidelines that say if there are neurological symptoms you should continue with alternate day injections until there is no further improvement. I’m sorry I don’t have the technical expertise to give you a link to these guidelines but I’m sure they must be in the pinned posts.

Failing that I’d source my own hydroxocobalamin and find the injection frequency that’s needed to keep your symptoms at bay.

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Your GP is not abiding by section 9.1.2 of the BNF/NICE guidelines on treating neurological symptoms by injections on alternate days until no further improvement, as mentioned by JanD236.

Self injecting is absolutely fine once you get used to it but at the same time, we need to educate these GPs that they are ignoring the information they already have to hand in each room of their surgeries.

With the help of forums like this, patients are educating themselves to be their own health advocates so fortunately, there is more awareness about b12 deficiency and thyroid but this doesn't seem to have reached our GPs yet!

Good luck with everything.

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