I have had some altered sensation since June, initially both feet whilst in bed and since July both arms and hands are tingling mainly in bed no matter how I lay. If I have had a bad night, my upper arms are a bit heavy the next morning. I was treated with a month’s antibiotics in case of Lyme (had bullseye rash following bite Oct 2015) and am on B12 injections as levels low.
Had nerve conduction studies in August - normal. Had first MRI in August reported as non specific white matter changes and spine clear. Then saw neurologist in September and was fairly sure she thought it was ms from my symptoms. MRI and the fact my Mum has PPMS. We looked at my MRI together and she wasn’t sure if they were lesions but there were 3 areas of concern and one was in an area where ms is typically found. Her plan was repeat MRI in 3 months, evoked potentials and lumbar puncture. I had the EPs in November - normal and MRI in November - unchanged. I was originally booked for the lp just before I was due to fly away on holiday last month so I postponed in case I got the headache afterwards.
Well I got a phone call earlier today to say that a letter the hospital had sent had been returned as they had used an incorrect address and I was booked for the lp at 10am tomorrow! The nurse did say that she would quite understand if I wanted to postpone but it wouldn’t be until the New Year. I asked for time to consider and spoke to my husband. I have decided to go for it as saves worrying for too long.
Any tips for the lp? Does the above symptoms and test results sound like ms?
At work today so keeping busy and have only had today to worry about it. Having said that I would’ve got more organised at home had I known. I think they only get you lying down at the hospital for 1 hour. Should I lay down at home? How long for? I am drinking lots today too to keep hydrated. Good tip re the coke, I have some at home in preparation for whenever it was as read it somewhere else.
I have called the Unit that does the LP and they have recorded on my notes that I am nervous. The person I spoke to although not a nurse was very reassuring and explained what happens. She said that the Dr doing the LPs has done loads and like doing them! She said that my husband can sit with me whilst it is done which is good for me (not sure about him though)
Anyone know how long I need to lie flat for at home? Had planned lunch out onm Sunday? Will I need to cancel? When does the headache develop if it’s going to? Ima due back to work on Monday.
Thanks Alison, I’ve been drinking loads today to pre hydrate myself. Planning on drinking coke whilst laying flat afterwards. Then coming home to lay flat for rest of day. Got OH on cooking duties. Hopefully it’ll be ok. At least it’ll be done this time tomorrow.
Thanks everyone for taking the time to try and reassure me. It saves me wearing OH down too much.
My experience of an LP was very much like Mike’s. Just a bit of pressure and no adverse effects like a headache. My husband was with me and the only problem was he kept making me laugh - not when the needle was going in but, when the needle was in and the doctor was getting ready to draw fluid he exclaimed “you’ve got an ariel!”
Best wishes for this morning. I am sure that you will be fine. You are definitely doing all the right things by keeping your fluids up. The worst thing for me was the worry in the build up in the days before I had mine. The 2nd worst was being forced by the nurses to lie still afterwards. I hate having to be flat like that as I always feel like a tortoise that has been turned onto its back and can’t get up! The actual procedure was a very distant 3rd worst.
Thanks everyone. Up already as having hardly slept but at least I’ve only had 24 hours to worry about it. When does the headache usually develop if it does? Should I come home and lay flat for rest of day and resume normal activities tomorrow?
Thanks everyone, all done and back home. Not as bad as I thought. Sussed out that it was a trainee who was originally going to do it so politely declined once I asked how many he’d done -7 or 8. Asked for the other Dr to do it and he was really nice and put me at ease. Could’ve gone home almost straightaway and they did sit me up afterwards. Sat semi reclined at home now with a coffee.
Thanks Mick, think I’ll take it easy today and then back to normal tomorrow. I’m just not a sitting around kind of person though. Didn’t sleep that well so might doze. Just waiting for the results now. Got follow up on 10th Jan.
I know that nobody can say for sure even the neurologist may not be sure but what’s people’s opinions on my history, symptoms and results? Does anyone else have symptoms mainly at night? The only positive results so far are the symptoms and an inconclusive MRI.
No headache so far but do have hip pain and back pain. Had hip pain more or less straightaway walking away. Looking at position it’s the side of my spine he went in as was slightly off centre. Anyone else had that?