ms diagnosis what's the next step?

Hi my names Janine. I have suffered with numbness in my legs for about 4 years been backwards and forwards to doctors eventually had MRI on spine for it to come back normal in September just degenerative disc, 3 weeks ago I lost my sight in right eye coincidentally my 13 month old daughter had head butted me in her sleep so was sporting a black eye 4 days earlier. Up hospital a&e for 4 hours and eye specialist for 5 hours on the Monday for them not to be able to see what was wrong I felt like they thought I was lying! I then got a call the Tuesday for MRI on brain Wednesday had that done and neurologist on Thursday 23/11 he said I had lesions on my brain which pointed to ms he put me on 5 day course of steroids for optic neuritis and my sights back not perfect but able to see I had a lumbar puncture done last Wednesday 29/11 how long do the results take and what will be the next steps I’m so worried but want to know as the limbo iof not knowing is awful

thank you for reading xx

hi janine

it looks likely that you’ll be getting a diagnosis of ms.

results of LP take the same as results of MRI. it will probably be mid february.

you’ll be transferred to an ms specialist neuro for the dx.

also should be introduced to your ms nurse.

then asked which DMD (Disease Modifying Drug) you would like to try.

you may want to read up on these in preparation.

the MS Trust has a good leaflet.

carole x

Thank you Carole

It’s the waiting game that’s the hardest things that I’ve had for a while all the aches and pains then I read up and find it’s a symptom of ms apparently my doctor wrote on my notes 4 years ago query ms but never said anything to me. My concern is my job I’m an hca looking after elderly in their own homes I’ve not been able to work the last month and still not 100% but going back Saturday and it’s then my body hurts and I just want to sleep but I can’t afford to give up x

good luck with work

Hi Janine

Living in limboland is really pretty horrible. It does sound like you’ll end up getting a firm MS diagnosis reasonably soon though. The good news is that as the optic neuritis is recovering (aka remitting), with the help of the steroids, it’s likely that you’ll be given a diagnosis of relapsing remitting MS. Which in turn means that you should be offered some disease modifying drugs (DMDs). These are designed to reduce both the number and severity of relapses. So it’s likely that once you get over this period, get a firm diagnosis and start a DMD, that you might find it’s years before you have any other relapses (with a good bit of luck and a decent DMD that suits you).

Try to take life easy while you recover from the relapse and the steroids. They do a good job of speeding up the remission of a relapse (most of the time), but steroids in themselves are a heavy duty drug that take a bit of getting over. That will be adding to your fatigue.

Something that might help is to look at Managing fatigue is quite important and some of the ways of doing so are small in themselves, but make a big difference. Things like cutting tasks down into small chunks and resting between jobs seem so simple, but it’s a case of getting used to actually doing it that’ll make the difference.

Hopefully it won’t be too long before you get the LP results, and assuming that you do get the MS diagnosis, it shouldn’t be too long before you get an appointment with an MS nurse and can get going on a DMD.


Thank you Sue

the neurologist said something about relapsing but I was in a state of shock and couldn’t take anything in at that moment and since then I feel like a rabbit caught in headlights not knowing what way to turn I will read the post you having suggested and thank you again for your answer it has eased my mind a hell of a lot

janine x

Hi Janine

You’ve experienced something that affects many people in a neurology appointment, especially one in which you are diagnosed with MS; you come out having had a kind of ‘brain freeze’. It’s like after you hear the words MS, everything else is forgotten as your brain keeps repeating ‘MS, OMG, MS, OMG’!

It can happen in other neurology appointments, which is why it’s often a good idea to take someone with you whose job it is to remember everything you forget!!

You can find lots of information on this site and (I find especially useful) on the MS Trust website. If you type in a search word, eg diagnosis or symptoms, followed my MS Trust, you will find lots of helpful leaflets.

And of course, you can ask on here anything you don’t understand, or stuff about symptoms, or how to deal with the diagnosis (shouting ‘it’s not bloody fair’ is a good start I think!). We’ll do our best to help. It’s a bugger of a thing MS, and everyone needs a bit of help getting their head round it.