Newly diagnosed

Fingers crossed you’ll keep the headache at bay and be able to work! Just keep laying flat for as long as possible even if you feel fine as it’s the best precaution :slight_smile: I got my VEP and lumbar puncture results back last week and the VEP was negative but the lumbar puncture was positive for oligoclonal bands - my neurologist says he’s fairly certain my I have MS but he hasn’t got enough evidence to give a formal diagnosis so he’s asked me to have another MRI in 3 months (brain, neck and full spine with contrast) so he can look for new lesions as just one lesion, one episode of symptoms and oligoclonal bands aren’t enough yet. I’m guessing your neurologist may be the same as mine and not refer you to an MS nurse/for medication until you have enough results to confirm the diagnosis, so in your results appointment they’ll be able to update you on what the picture appears to be and what the next steps are.

Im in Manchester under the expert care of Salford Royal. Although no formal diagnosis yet I have been assigned an MS nurse who is fab.

Timescales are about 6 ish weeks for results, I can see nurse when I choose, it is a discussion with her when I next feel I need an appt and always at the end of the phone. I am hoping when I next see neuro in March I will have a concrete desicion but will see. I can’t stand ‘limbo’ land much longer

Mel

Gutted, hyped myself up and checked in to poole hosp for lumbar puncture and last minute the doc got called to an emergency so has now been postponed till Thurs at 2pm.

Hi Danny

I really feel for you, my first neuro appt was cancelled, I had got myself so wound up I think I cried on the phone when they called, luckily it was rebooked a few days later. Thursday isn’t to far away, I hope work have been accomodating. Good luck again I am so sure you will be fine, just take all the precautions - lie flat, coke etc.

Mel

Oh no, how disappointing :frowning: sorry you’ve had to go through that - fingers crossed after a false start everything will run extra smoothly tomorrow :slight_smile:

Hi Danny. I had the opposite experience, I was called with a cancellation and asked to attend at 11.30 that day for lumbar puncture at 12. It meant no sleepless night beforehand but it was a bit of a farce and I didn’t get it until 4.30.I was then told to lie still for an hour but a nurse came in 15 minutes later with her coat on and sent me home as they were closing. It cost £9 for the car park and the day after I got the headache from hell for about 4 days. The lumbar puncture was fine though, hardly felt a thing. Karen.

Hi there Danny

Your LP being postponed like that really is a bit of an, err, umm… disappointment !

I wish you good luck for Thursday, and just want to say that my LP, a few years ago now, was painless. I honestly felt nothing, but the next day I did get the headache; however, I was home in my own bed by then, so I coped with it.

If you are unlucky enough to get the headache, drink lots of fluid, lie flat, take painkillers and ask everyone else - politely - to leave you in peace. (If that fails, ask them impolitely)

Best of luck

Ben

Lumbar puncture all done, felt the stab from anaesthetic and some prlddi g and poking but no sign yet of any headache did lay for about an hour then had a coffee so now gotta wait for consultant appointment to over view results

I’m glad it went ahead and that it was better than you expected! Fingers crossed you won’t get the headache, but keep loading up on caffeine and laying flat just in case - sorry for repeating it so often but the headache really is awful and leaves you incapable of doing anything for several days so if I can help anyone else avoid it I will!! Have you got a follow up appointment booked? I hope you have positive things planned to take your mind off the results while you wait :slight_smile: