Hi I have not been well for almost a year now my symptoms started with loss of balance and focus issues after many trips to doctors and hospital I have a lumber puncture set for 11th August, over recent weeks things have got worse with my balance weak legs tremors and bed wetting. I’m very scared about what’s to come any advice would be appreciated thanks
Hi Nicmus,
The best and only advice I can give is that you will deal with whatever happens - the vast majority of people do.
For the moment, you still may not have MS, so try not to jump to conclusions.
I’m afraid I can’t offer any advice about the LP, as I was diagnosed without needing one.
Five years on, I’m still OK - not brilliant, but OK.
An MS diagnosis does NOT mean you will die (well, not prematurely, anyway - we all have to someday), and does not necessarily mean you will ever become severely disabled.
Most symptoms, including continence issues, are treatable, if not curable. If it’s not suggested automatically, ask to be referred to a continence nurse about the wetting. I believe in most cases you can self refer, if you’d rather not go through a doctor, and you do not have to have a confirmed diagnosis - just to be having the problem.
Hopes this helps a little bit. Diagnosis can take a long time, but there’s absolutely no reason you should not be getting help with symptoms.
Tina
Hi Nicmus
Having the lumbar puncture done was nowhere near as bad as I imagined it to be; it was uncomfortable, yes, but not painful. I took the advice of many others, and laid flat on my back for a few hours when I got home, and drank plenty of water and caffeinated drinks (coffee and coke - oh, and a straw comes in handy too…) to help avoid the ‘monster headache’ often associated with LPs. For me it did the trick, as I only had a very mild headache.
Getting to the stage of receiving a formal diagnosis can be a lengthy process, and one of the only ways I could deal with it all was to think of each test as ‘another step closer.’ Yes it can be a real scary time, frustrating too, but ultimately it’s better to know than not, and better that its the right diagnosis.
Tell your neuro how you’ve been when you see him, but in the meantime please don’t suffer in silence - meds can make a world of difference to how you feel on a day-to-day basis!
Good luck, let us know how you get on.
Debbie xx
p.s. you can self-refer to a bladder clinic
Take a look at this guide and make sure you ask for the right needle. Your Lumbar Puncture at The Royal London Hospital
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