I haven’t been diagnosed although I’m under a neurologist and being investigated for ‘suspected MS’. A bit of background - I had MRI scans towards the end of last year that were clear after experiencing some pretty disabling symptoms summer of 2015. The neurologist also wanted me to have a lumbar puncture. Although my symptoms of numbness/weakness, tingling etc have over the last few months improved to the point where where this things are more or less ok now, I still have problems with fatigue and my eyes - double vision and difficulty with eye coordination. I thought the doctor might say the LP was no longer necessary, but because of my eyes and how I’ve recovered the neurologist still wanted me to have a LP. They explained that if this is the first episode it wouldn’t be classed as MS as this type of thing can occur and can be a one off, and that I could wait and see if anything happens in the future. However if there is evidence in the CSF that white cells have been active in my brain, apparently I could be treated with something to stop any further attacks in the future. (I don’t know what - I haven’t gone down this road yet as realise nothing may be found.) On this basis - and on serious consideration - I agreed to the LP. My dad was diagnosed last year with MS after years of symptoms, although I realise that it doesn’t mean my symptoms will be related to this.
I went to have the LP last week after a long wait. The doctor was lovely and very kind but it turns out that for some reason the bones in my spine are tightly compressed and they couldn’t get the needle through. They would have persevered but I started feeling unwell so they stopped. I thought it would be fine as I’m slim so feel gutted that they couldn’t do it. I now have to wait for an appointment to be seen by a radiologist to have the LP done guided by X-ray. I’m probably being silly but I’m feeling really low about everything and the thought of more waiting. I don’t know if having the appointment has brought everything up again - I’ve been doing quite well getting on with not thinking about things, and to be honest just working full time is exhausting with the fatigue. I’m not someone who believes in self-diagnosis, that there is no magic wand or quick answer to anything, and appreciate there are many more people with a lot more to cope with, so I feel like I have no right to be feeling low.
oh jesus, i had a normal lumbar puncture, that went ‘textbook’, and was still the worst experience of my life…you have my full sympathy having to go through it again (i personally couldnt do it after my first experience!!)
it’s not all horror story’s with the LP, I’ve had a normal one & had no problems at all. Not sure about an x-ray LP, but I’d imagine it would be easier if they’re guided by an image…so try not to worry.
Sadly the road to diagnosis can be very long, that’s why people are usually told to ‘wait & see’ if anymore symptoms occur. Should that happen, & a diagnosis is reached, the neuro would maybe discuss DMD’s with you to help with any possible future symptoms.
I had a normal LP and apart from having it sitting up due to my hip replacements it was fine. I have dodgy veins and have had xray guided injections a number of times. Its easy and even better you can watch it on a screen (if your not squeamish). I ended up having a portacath fitted to make life easier.
Don’t worry about the LP, it will be very simple with the xray xx
This is exactly what happened to me. The neuro couldn’t get the needle in. I was full of local anaesthetic so it wasn’t hurting, but not very pleasant and after about 20 mins we all agreed to stop the procedure and for me to have it done under X ray guidance by X ray.
This wasn’t any problem at all and was done very quickly. Again I’d had plenty of local anaesthetic but it made all the difference that the consultant could actually ‘see where he was going’!. I’d been rather anxious about the whole thing, but looking bad it wasn’t too bad at all.
How horrid for you. The X-ray guided one ought to take the guess-work out of it, but I am sorry that you had to go through a failed attempt to find out that your spine doesn’t make life easy. I hope that things are now straightforward.
At least you know now and, should you ever need another LP some time in the future, you will no doubt be very firm about requiring X-ray guidance!
Thanks very much Louise and Alison for your replies. I really appreciate you both responding to me.
I feel more reassured from your experience Louise that the doctor should be able to do the procedure easily under X-ray guidance. I’ll also definitely remember this if I need another LP in the future.
Thanks again to everyone who has replied and best wishes to all.
Thanks very much for posting Backs, I appreciate it. It really helps to hear from you and Louise that your second attempt at a LP guided by X-ray was quick and easy. It helps me feel reassured that they’ll be able to do it second time around whenever the date comes through. Thanks for the tip on fluids and coffee too.