Advice please :)

Hi everyone I’m new here, Basically this time last year I got a numb leg (I could still walk etc the skin just felt different) so I went to the GP who gave me antibiotics and then it went away. Then this summer I got a pain in my left eye and then lost vision in it, which after tests was confirmed to be optical neuritis. So anyway, I had a VER test whereby electrodes were put on my head and I had to watch a screen. This showed that my left eye was responding a lot slower. I’ve had an MRI on my brain and there were 2 abnormalities( the neurologist said 9 is a concern). So he said putting it altogether the only cause for these would be MS. I’m being sent for a lumber puncture so he can be 100% certain but he said there is no other explanation for it at the moment. If ‘attacks’ are frequent I was told I’d be given injections to administer myself every other day and there is a 40% chance these will reduce attacks. So really I was just looking for advice really as I’m 23 and it’s come as a shock. Will I suddenly find there are days when I am unable to walk? I’m a primary school teacher so I’m concerned it will affect my job. The neurologist was talking about the possibilty ‘disabling attacks’. At the moment it’s a case of waiting and seeing how many attacks in the next 2 years. I was quite accepting of it but my mum who was with me did not cope well with it which in turn has panicked me a bit. Any advice help much appreciated Steph xxx

hi steph

its difficult to say how another persons ms will be but if its any help i havent gone downhill too much in the 4 years since my diagnosis.

you will have days when you feel your walking has deteriorated but tell yourself that tomorrows another day.

i was a primary school teacher too. now i’ve been medically retired. i’d like to go into school as a volunteer helper but i can no longer get onto the floor or back up again without assistance. if i cant play on the carpet then i dont want to do it.

i go to a gym 3 times a week because i’ve been told by a physio that i must strengthen my legs.

it’s a gym day tomorrow - whoopi do (sarcastic)

i can get onto the floor for my yoga class and back up again but its a bit ungainly.

ask for a referral to a neuro physio, they’re great and know a lot about conditions like ms.

don’t get bogged down with worrying - that worse case scenario probably wont happen or at least not in the near future

you’ll feel better once you have a plan.

take care

carole x

Hi Steph, and welcome to the site

It is looking suspiciously like MS by the sounds of things, but it really isn’t the end of the world - most people with MS live long and happy lives and, while it’s a challenge at times, we still do all the normal stuff like work, get married, have kids, travel, party, etc. Life can still be good :slight_smile: It’s easier these days too because there are many more meds available to help with symptoms as well as disease modifying drugs (DMDs) that are getting more and more effective.

I’m a little concerned that your neuro mentioned 9 lesions: this is the old way of diagnosing MS. It might be that he was trying to be reassuring, and it sounds like he’s not actually using it as a way of diagnosing, but I wonder if he is an MS specialist? If he isn’t, then he should really transfer you to one.

The injections he mentioned are one of the DMDs. There are more than the one he mentioned and they do more than reduce the number of relapses - they also reduce the severity of the relapses that we still have and reduce disability. As he said though, there are eligibility criteria for them - this is purely and simply because they are expensive, so they only give them to people who are having more serious relapses. Personally I think this is a lot of b******* and it would be better for everyone with relapsing remitting MS (RRMS) to be offered them, but the NHS doesn’t have bottomless pits of money :frowning:

As far as suddenly not walking goes, there is a small chance that you might have a relapse that makes walking difficult, but there is a very good chance that you would make a good recovery from this - that’s the thing about RRMS: we sometimes have nasty relapses, but we also get remissions. Unfortunately, remission isn’t always perfect and the residual symptoms tend to accumulate over the years, but the chance of you suddenly not being able to walk and it staying that way is absolutely minute. A real life example: a good friend of mine had a whopper of a relapse which left her unable to walk. It took months of hospital care and daily physio to get her walking again, but she did it. More than twenty years later, she is still walking brilliantly. In fact, she doesn’t have a car at the moment and thinks nothing of walking 3 miles to the shops every day!

Re your mum: having anything go wrong for a child is heartbreaking :frowning: Not understanding that MS is not as bad as films and TV programmes make out can add to this, as can a feeling of guilt (“What did I do to cause this? What could I have done to prevent it?”). Learning more about MS and understanding that it is absolutely no one’s fault can help a lot. Time and experience does the rest. Take it one day at a time and you’ll both be fine.


Karen x

Hi Help, Ive been under the neurologist since July 2012 after having brain inflammation and back surgery!!! After Appointment after appointment I have an ms nurse and awaiting my Lumber Puncture in Jan for hopefully a clearer picture! I’m worried about paying my mortgage if I have an episode. My son is 2 and my husband is fab but he can’t pay it all! As I’ve not been fully diagnosed as yet ( but lots on my medical notes referring to it ) would Insurance Cover be accepted or not??? Anyone tried before diagnosis ? Thanx Claire

Oops I’m really sorry Steph just realised I’ve posted it on your section! I’m new to this!!! : ( x

I’m afraid it is very unlikely that you will get critical illness cover that covers you for MS or anything remotely like it. It is one of the pestilential buggers of life that it is necessary to get these things in place when one is fighting fit, not when one’s notes are plastered with ?this ?that chronic progressive neurological condition. If you wish you had thought of this sooner, then welcome to my world!

Which isn’t to say it isn’t worth a try, of course, but it is hard to see how you would fill in the insurance company’s pre-acceptance questionnaires honestly without their ‘game over’ light coming on. Sorry. As a financial adviser explained helpfully to me when I was in a similar boat, ‘You can’t apply for critical illness cover when it looks as though you might already have one.’



Yeah Alison our thoughts exactly Thank u Claire xx