Hi, I have a lumbar puncture tomorrow yet I have already been told it is MS! So now confused as to why lumbar puncture is still needed.
I have been visited today by team to see what help and assistance I can get.
Everyone has been so helpful so far but it all seems to be moving at 100 miles an hour now and I am struggling to cope.
I am scared about tomorrow and the future. I have constant numbness in legs and feet and really struggling to walk at the moment. I understand that this may calm down but this is now day 35 of this so have no idea if this is the norm sorry. For the first time in my life I feel lost.
It has been useful to read some of the posts on here already so thanks for that.
I wouldn’t worry unduly about the lumbar puncture @Ditchy . When I had my lumbar puncture before getting the final diagnosis of ms, my then consultant said that he/they do all these tests to rule other stuff out and then what it isn’t, must be what is left, so that must be what it is. Hopefully that reads as I have tried to explain it They rule everything out before giving you a diagnosis.
The numbness I have had for a good while now. It’s in my feet, both of them, specifically my toes except my big toes on either foot. It’s now constant. It’s literally been there for months and months and months. I don’t know if it will ever go or if that’s just the way it’s going to be, now.
Sending you very best wishes that your lumbar puncture goes well and also that your numbness does eventually disappear.
Hi Em,Try not to worry yourself over it too much. I had my first lumbar puncture done by a trainee and, it went very well. They’ll get you into a position so that the part of your spine that they need to access is as safe and easy to get to as possible. They just need a little CSF , probably to confirm their diagnosis before giving you a strong medication.
I think you’ve done the right thing by reading up on the process - I’m always happier when I know what to expect.
You’ll be in good hands tomorrow and, it’ll be done and finished fairly quickly. Come back and let us know how you get on afterwards. My next one is booked for early next month.
Maybe plan yourself something nice for dinner tomorrow night so that you have something to look forward to.
I hope you get on ok at the lumber puncture. Take all the assistance you are offered, you might think that you don’t need/want it but it’s much easier to have it and not need it than it is to need it and HAVE to wait for something.
Hello @Ditchy . I’m not totally sure why these days a lumbar puncture is required - I didn’t have one when I was diagnosed 19 years ago but I guess practice changes.
I was diagnosed after optic neuritis which removed most of the vision in my right eye. The vision did return - not fully but I don’t notice the slight loss. It took a long time to recover - maybe a little over 2 months - so give yourself a bit more time
I am sorry that you are having a horrible time. What a lot of worry you have to deal with.
Try not to worry too much about the lumbar puncture. An older relative of mine had had a nasty experience back in the 1950s and this had become part of family lore and so I was scared stiff, but mine was absolutely fine.
My situation had been similar to yours: diagnosed bar the shouting, but the neurologist explained that he liked to have as complete a baseline clinical picture as possible as the time of dx so would like to do a lumbar puncture for completeness, so that’s what we did. There were no surprises.
Hi All, firstly many thanks for your kind words and information. It really does make a difference thanks.
All went well yesterday and head and back pains today were expected so coping with that.
Results in 2 to 3 weeks and being kept well informed by all.
I have been accepting help (Which is difficult for me ) so thanks for the comments around that. Think I am slowly coming to terms with how things may change for me going forward and messaging on here is very useful.
I’m glad it went OK Em and that you are looking after yourself and accepting help.
It’s a lot of adjustment isn’t it? And it hard I think because none of us know how we will be affected so it’s not predictable. We don’t know what we’ll be adjusting to and when, and the h certainly can be very hard. One person with MS may have big life changes to deal with and another may remain pretty well for a long, long time. And I think the new treatments that are available now make the latter much more common.
I think any big changes like this diagnosis can on average take a number of months to adjust to. Give yourself time, get some help to process it if you can and go gently
My neuro consultant called me yesterday - he said it was a very experienced team doing my lumbar puncture today.
The 2 lady’s were great - I didn’t feel a thing. The first time that I knew the needle was in was when they were counting the MLS that they were collecting.
The worse part was the cold antiseptic spray on my back lol.
*For anyone else looking in here - this procedure really is nothing to worry about x
My infusion went well thanks. I’m glad your LP was ok. When I had mine I was in hospital and they had 2 unsuccessful tries at it on the ward so finally they took me to the anesthetists and they were fab, like you say the only reason I knew they were doing it was them counting the mls when they were coming out..
They rule everything out before giving you a diagnosis.
