How to cope in the meantime?

Need to keep this brief, left hand difficult to type with - numb.

Came out of hospital 28th Feb. Had a MRI which showed a large white lesion. Neurologist highly suspects MS. I also had a Lumbar Puncture.

The doctor who did the Lumbar Puncture said my results will come back in 10 days time. Procedure was on 28th Feb.

Since then, i’ve received a letter saying I have a follow up appointment with the Consultant Neurologist on the 26th April…

I feel like i’m getting worse. My balance and coordination is all over the place, keep banging into things and yesterday I fell over. I feel constantly weak in my muscles and keep dropping things.

The hospital gave me no number to contact for results and so I don’t know if I’ll be receiving a letter or what I have to do (they seemed so busy). I went to see my GP last week and she says there is nothing she can advise.

I feel scared because of what’s happening to me and I feel like i’ve just been left.

Hello and welcome :slight_smile:

Typical NHS communication by the sound of it, i.e. rubbish :frowning:

What you can do is phone the hospital and ask to be put through to your neurologist’s secretary. Make friends (explain how scared you are and ask for their help), ask them about what will happen with the results, tell them that your symptoms have worsened significantly and that your GP is stumped and you don’t know what to do, does she/he think that the neuro could recommend anything?

In the meantime, it might be worthwhile asking your GP to make an urgent referral to neurophysio - they might be able to help you with your balance. Also rest as much as possible and be careful - you don’t want to be adding any broken bones from falls to the mix! There’s no “pushing through” this kind of thing; all we can do is let it take its course and be as kind to ourselves as possible for the duration.

The other thing you could do is tell the hospital appointments people that you will take a cancellation if any come up. Not too soon though - you need to be sure the results are back.

Hang in there!

Karen x

Thanks for your advice Rizzo. Much appreciated. x

Hi OceanBlue

Firstly, I hope you get things sorted soon for your own peace of mind if nothing else. End of April is a long time to wait, although many Consultants take most of the Easter holidays off (often 2-3 weeks, especially if they have school aged kids, which the bulk of them do) and then find their clinics in the weeks immediately after completely full. Also, if this coincides with holidays or annual leave in the radiology department then you automatically get a backlog; there tends to be virtually nil communication between the two when it comes to staffing/holidays. It’s the same in the private sector, despite what assumptions people have. (My wife is a Consultant Surgeon so I kind of know how they operate and what time pressures they are under).

I’ve got an LP tomorrow morning. I had brain scans on 1 March and am praying that I get some sort of diagnosis by middle of April. Like you, my balance is all over the place. I dropped (actually more like it just silently slipped out of my hand) a half-open bottle of lemonade in the kitchen yesterday and it squirted absolutely everywhere. My kids found this highly amusing, as they invariably do, but there was hell to pay with the Cillit-Bang for the next half hour!

I’ve had these symptoms for over five years now, but only summoned up the guts to go to my GP about it last Autumn, so I don’t feel I’m getting any worse but am sure it will develop in a sinister fashion over time.


Stay strong.

Thanks for your reply Clucker Pigeon. Unable to type very much because of my hand, fingers and arm.

All the best with your Lumbar Puncture.

Take good care.

Hi hun, just wanted to say that I know how scary it is when things happen that we dont understand.

i`ve been battling with my disability for 15 yrs now. I was in limboland for many of those years.

Some days are easier than others.

be good to yourself and rest whenever you want or need to.

luv Pollx

Hi , I feel the same . The wait is one of the hardest things to get you head around . I just want to know what is wrong with me, so I can get on with the rest of my life . It took ages to convince my GP to send me to s Neuro and then and another 3 months to see him , and then another month for the nerve tests and then a further month till I get the MRI of brain and neck . Who knows how long till I get results and then a further consultation. I got so frustrated I phoned the neurology secretary who told I might not even get a second appointment! Sorry for going on, my biggest problem is that my nearest hospital is 2 hours drive away and they won’t put the appointments together. Hopefully the wait will give us the answers we so really want. All the best Pete