Please could I have some advice...

Hi. I began feeling very unwell in May. I just woke up one morning with pins and needles, loss of sensation in finger tips, uncomfortable painlike electric shocks down my neck and spine when I move my head forward and a tight hugging sensation around my stomach and chest which felt really uncomfortable for months. I went to the doctor about 4 days after my symptoms started and he sent me for blood test which came back with low white blood cell count. He said I had an infection that my body had recently fought off on it’s own. He didn’t send me for anymore tests and told me it was probably stress as both my parents have had cancer in the last 2 years and I’ve been very depressed and anxious. The symptoms began to get worse. I noticed fatigue, trouble breathing and I felt very unwell whilst in the bath or out in the sun. My doctor kept making me go for blood tests. I asked him if there was a possibility that it might be MS, as my uncle was diagnosed at my age and someone else in my family were sufferers and he point blank said no, that symptoms only occur on one side of your body and the kept insisting it wasn’t serious and that MS isn’t hereditary. Eventually I couldn’t take it anymore and went straight to the hospital where they referred me back to doctor asking to please refer me to neurologist. He did and the neurologist referred me for EEG and MRI. I had my MRI 7 or 8 weeks ago now and had to rescan as they found something at the bottom of my spine which required me to have contrast dye. My tailbone and lower back just hurt constantly with the symptoms worse of an evening. MRI confirms inflammation on brain and possibly spine though I have been fast tracked for lumbar puncture. My appointment in Tuesday and I’m scared I won’t be able to sit still. Please could someone tell me if my symptoms could be MS as I’m so scared but my doctor told me my worries are unfounded?? Also, please could someone talk to me a little about their experiences with lumbar puncture if that’s okay…? I’m scared I won’t be able to be still during the procedure because of the back pain.

hi daze,

don’t worry yourself into a state of panic.

tell the doctor who is doing the lumbar puncture about your back pain and worries about keeping still.

you will in fact be lying on a bed, curled into a foetal position which enables the doctor to insert the needle between the vertebrae.

so there is no danger of you moving as you worried.

it’s not an experience that i’d like to take up as a hobby but not as bad as your imagination expects.

carole x

Hi Daze

You’ve had a bit of a journey, getting referred to the neurologist. What a numpty your GP is. (Sorry, but it’s true, MS does whatever the hell it likes, you can tell it to only affect one side of your body, but it will just do exactly as it pleases.)

Carole is right about the lumbar puncture. The only way it can be done is for you to be laid on your side with your back curved. This stretches your spine out so the doctor can get a needle in between your vertebrae and extract some fluid. They numb the site where the needle goes in. So it shouldn’t hurt. It is a weird sensation even so. And you can’t exactly take your mind away from the fact that someone is sticking a needle where one really shouldn’t normally be.

Lots of people get a ferocious headache following an LP. One way to avoid this is to stay laying down for as long as possible after the test. At least an hour, more if the hospital staff will let you. Also, drink lots of caffeine. Generally, full sugar coke is the best thing, the sugar helps as well. But take a bendy straw - if you are laying down you’ll get covered in coke otherwise.

Don’t panic about the LP. Most of us have had one. They really aren’t nice, but bearable. Just like Carole, I wouldn’t take it up as a hobby.

Your symptoms could obviously be MS. It’s not exactly an hereditary disease, but having close relatives with it does increase your chances of developing it. And the problem with MS, is that it shares symptoms with other diagnoses. So it may not be MS at all.

Best of luck for Tuesday, let us know what happens next.


Hi Sue,

Could I ask, why have caffeine after a lumbar puncture? I may have to have one but I am not allowed caffeine because I have interstitial cystitis and my consultant has told me to stop having it as it aggravates the pain and sensitivity. I gave up coffee, including decaf, about 2 years ago. I find now that if I have even a tiny amount it makes me feel really ill.

Obviously, if caffeine is needed after an LP then I am in trouble!

Kind regards, Ang x

hi ang

drink loads of water to offset the caffeine’s effect on your bladder.

it may help offset the LP headache.

talk to the doctor at your hospital.

carole x

Hi Carole,

Do they recommend the caffeine after an LP? If I need one I will discuss my concerns with the doctor.

Thank you, Ang x

Hi Ang

It’s not essential to have caffeine. It’s actually more what people have found to work on reducing a post LP headache than something proved by clinical evidence.

In fact I had my LP in 1997 and there was no helpful forum available. Plus, I didn’t know what I was being tested for nor what the tests were supposed to look for. So I had no caffeine, no laying down for ages (although I was an inpatient at the hospital so I probably did anyway - I remember finding it an unpleasant experience), no helpful advice that I can remember at all. And I don’t recall getting a headache.

If you have to have an LP, ask the doctor / nurses for advice. Drink lots of fluids. Take painkillers as a preventative measure and lay down for as long as possible. Don’t take caffeine and risk your IC from flaring up, especially as you’re not used to caffeine. Try drinking sweet fizzy drinks instead. The sugar may well help.

Try not to worry.


Hi Sue,

Helpful advice, thank you. I’m glad to know that you didn’t experience a headache when you had your LP.

If I even have a very weak latte I end up with a terrible head and feel ill so I wouldn’t be able to cope with caffeine. Sugary drinks and plenty of fluid sound like a better option for me.

This is all conjecture anyway as I may not even be sent for a lumbar puncture. In any case, the more information I have prior to any procedures, the better.

I appreciate any comments or advice.

Ang x