Hope everyone has had a great Christmas.

im really struggling to understand what my neuro is thinking. I’ve only had one appointment with her back in early Oct. I’ve since had MRI’ brain and full spine - clear. All the blood tests imaginable - normal (except Vit D, but isn’t everyone a little short on that! Ha ha ), NCS - ‘absolutely normal’ and waiting for the results of a lumbar puncture.

each time, I’ve been for testing, I’ve only gotten the top line results from the letter she sends my GP, I ask what now, and he says you need to see the neuro again… Call her secretary and get told no point in seeing you just yet, the neuro, suggests we test …

My GP, says he won’t second guess what the neuro is thinking… And the neuro won’t see me to discuss my results, or explain why she suggests more tests… The secretary said she usually pops to see people when they are on the ward to have the lumbar puncture, but she didn’t come to see me… It was Christmas Eve, so guessing the holiday season kicked in

She initially mentioned MS as a possibility, but also made it clear my symptoms could be matched to lots of other things too.

I’m just wondering if anyone with a MS diagnosis, had ‘normal’ NCS?

in my mind, because they came back normal, I’m wondering if MS is now off the table and the lumbar puncture is to look for something else.

thanks for reading


sorry rache

i have no idea what NCS is.

just hope it is less horrible than MS!

carole x

Hi, it’s just nerve conductive studies. One of the tests I’ve been sent for.



Hi Rache,

Yes; NCS threw me but it refers to Evoked Potential tests on your Peripheral Nerves (Nerves outside you Central Nervous System).

See somato sensory evoked potentials - multiple sclerosis encyclopaedia

For Lumber Punch/Spinal Tap see spinal tap - multiple sclerosis encyclopaedia

Please do not get yourself worried about an LP; the actual procedure is not painful; in fact the only thing you feel is a scratch when the anaesthetic goes in. The actual removal of fluid is just a feeling of pressure if done properly. I must stress if done properly; do not let anyone practice on you insist on someone who is experienced.

It’s after you MAY get something called ‘the headache from hell.’ To cut down the chances of getting this you should lay flat for at least 3 hours do not even get up to go to the loo; use a pan. Drink at least 2 litres of classic Coke, not diet; it’s the caffeine that aids replenishment of your CNS fluid. Being your drinking a lot take one of those bendy straws otherwise the bed will get more Coke than you. If you want a change of drink very strong coffee.

These things will drastically reduce your chances of getting a headache that could last about 8 days. If you have a couple of days off work and rest if you do not get the headache, if you do 10 days off work.

If the headache last more than 10 days you could need a blood patch; especially if there’s a wet patch on the bed in the area of the spine after a nights sleep; this is rare.

Good luck.


Hi Rache,I had an L/P not so long ago and it was ok. Some ppl get a reaction and some nothing. MS can be really hard to detect in some ppl also so maybe that’s why your not getting a straight answer. You could also check out the MS trust web site and see if you see anything there that helps you understand your situation. I really hope you get some joy soon. Terry x x

Thanks for the feedback and links. the lumbar puncture went ok. Like you said the anaesthetic was the worst bit. Thankfully I didn’t get the headache from hell either :slight_smile: just the waiting game for the results now…

Happy new year X

Hey Rache,take it easy for at least a week after L/P as you can still get headaches till the your body replaces the fluid that was taken. Hope all goes well…Terry

Hi, it`s been a long time since I began seeing neuros…about 16/17.

I was tripping and falling a lot, due to drop foot. I also felt very tired and had no stamina for anything. I had leg and arm spasms too, plus bowel and bladder accidents

I`m 63 now and was 45 when my first symptom happened.

I presented as typical PPMS, as my mobility went down hill quite rapidly.

I`m telling you all this to see if any of it matches your current symptoms hun.

I had 4 MRIs, 2 LPs, a VEP and nerve/muscle conduction tests. Plus oodles of blood tests too.

Nothing came back proving anything at all. What they did do was rule things out, like Hughes, Lymes, tumours, I was given a 95% diagnosis of PPMS even so!

Move on a few years, when a different neuro said I had HSP…hereditary spastic paraplegia. By this time I had lost all mobility and needed a lot of help with personal care.

A year later, yet another neuro said it looked more like PPMS again!

Hope you`re ok following this…

Go on one more year and PPMS was finally ruled out, when I saw an HSP specialist. I was told that if I did have PPMS, I would be in a worse condition that what I was in !!!

So my diagnosis ever since has been HS/ cause unknown.

I hope you don get the run around I had, as it is enough to drive one up the nearest wall!

luv Pollyxx

Hi Polly, thanks for your post. What a nightmare you’ve been through and must be utterly frustrating.

My symptoms started with fatigue initially, which I was being monitored for - thought it maybe thyroid problems. Then a few months later I got a bad lower back and neck. which quickly progressed to numbness, pins and needles in legs, bum and arms and face, at which time I ended up in A&E at the advice of my physio and GP. I’ve been under an orthopaedic specialist, who has now said he’s certain my pain and symptoms are not bone or joint related and it’s not trapped or slipped disks. He does want me to have another MRI on my spine in the new year just to check wear and tear in my spine isn’t progress too quickly. But he’s adamant that my issues need to be investigated by neurology.

Ive been under the neuro for 3 months now and since my first appointment my symptoms have evolved but she won’t see me! She just keeps sending me for more tests. Just very frustrating as I have so many questions to ask and can’t get to see her to ask them. I just have to keep agreeing to more tests (her secretary has been very patient with me!!!).

I try not to let it get me down, but it’s so wearing, esp when people (including work) ask what’s going on and I have to say 'I’ve no idea!

I see a physio for my back, but he’s now concerned as we are not seeing any improvement that he’s treating me wrong and said I need to push to see the neuro!

My GP has been good trying to get the right pain management, but as for the questions I have, he won’t / can’t answer- he said it’s the neuro who needs to answer!

I do understand that it could be a long while to any sort of diagnosis, but some communication in the meantime would help me get my head round things better.

Thanks for listening/ reading.

Rache x