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 wouldnāt 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 isnāt, 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. Itās in my feet, both of them, specifically my toes except my big toes on either foot. Itās now constant. Itās literally been there for months and months and months. I donāt know if it will ever go or if thatās just the way itās 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. Theyāll 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 youāve done the right thing by reading up on the process - Iām always happier when I know what to expect.
Youāll be in good hands tomorrow and, itāll 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 donāt need/want it but itās much easier to have it and not need it than it is to need it and HAVE to wait for something.
Hello @Ditchy . Iām not totally sure why these days a lumbar puncture is required - I didnāt 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 donāt 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 thatās 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.
Iām glad it went OK Em and that you are looking after yourself and accepting help.
Itās a lot of adjustment isnāt it? And it hard I think because none of us know how we will be affected so itās not predictable. We donāt know what weāll 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 ladyās were great - I didnāt 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. Iām 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..
I have just been informed that my lumbar puncture shows no problems in the brain and only one band in my spinal fluid. I have now got appointments for further MRI for head and spine.
Now waiting another 3 weeks for further information and treatment plan.
As I am currently being told that as this canāt be confirmed as MS yet (waiting for new scan results now), can anyone help with how long the symptoms of CIS could potentially last for please as when I look into it it seems to say maybe a few weeks yet my first symptoms were in Feb last year and second, more severe symptoms started in Oct last year and havenāt got any better. Can symptoms of CIS last this long and possibly longer
The MS team told me last week that the symptoms I have now will never get any better and that I will just need to learn to manage (explained this far better than this) hence my confusion around length of symptoms.
I also have no idea how work will react to this news now as up until now it has been reported by my GP as MS.
I donāt think anyone can answer how long symptoms will last.
If you have relapsing remitting MS, you get a relapse with symptoms, then the symptoms (mostly) get better, though you are probably left with some residual symptoms. These residual symptoms wonāt get better. More relapses = more residual symptoms and increasing disability.
The idea of the newer disease modifying treatments is that they greatly reduce the risk of relapses, and reduce the severity of relapses, therefore you get less disability over time.
I hope you get some clarity soon from the new scans and your neurologist, this must be a worrying time for you.
Keep posting in here for support if you find it helpful.
ā¦.. my first brain lesion was found near the end of 2023. Developed Hydrocephalus early 2024. Diagnosed as CIS in March 2024. Mid 2025 they started saying Tumefactive Demyelination and secondary Epilepsy. I seem to be on a more even keel now but, still being monitored and investigated.
ā¦.. I know thatās a bit long winded but, I hope it helps.
I know itās not nice to get a āHow long is a bit of stringā answer but, it seems to be a bit different for different folk. My CIS didnāt seem to haunt me for too long before things changed a bit.
I found CIS a tricky one to explain at work - MS seems more widely known now so, you may find that you have to educate folk and fight your own corner quite often. (Please keep in mind that the equality at work act is there to protect you whether theyāve heard of your condition or not. Also, HR is only ever there to protect the company, not the staff.
They rule everything out before giving you a diagnosis.
