Mild ms.?

Hi finally had my neuro app today. My MRI scan came back with no more lessions than last time , so was convinced the neuro was going to tell me I was fine when he said with my physical examination and my history I have mild ms and he will see me in 9 and a half months , has anyone else got mild ms or ad a similar experience , so flabbergasted didn’t even ask if there was anything I could take o help my fatigue . Xx

Hi,

I was diagnosed a few months ago and to be honest, I feel a bit of a fraud. Looking at my symptoms and problems I know my MS is no where near the level other people are suffering. My first encounter with MS was 18 years ago and only went back to the GP this year because an urgent need to go to the toilet. I have had some symptoms over the years but I know from experience that the medical proffesion seem reluctant to diagnose MS. So, although no one has ever mentioned mild MS to me, I suppose that is what I have. It has never stopped me doing anything, with the exception of now, I need to plan my outings with a bathroom in mind!

Hi Tracy, ‘mild MS’ is a bit of a tricky one.

Some mild MS will stay mild thoughout a person’s life. A lot of MS is found when performing post-mortem examinations on people who had never complained of MS symptoms. So we can assume their MS was very mild and had stayed that way.

Some mild MS will progress… really there is no way of knowing. A lot of MS does progress but very slowly.

I would advise you not to even worry about what is mild for the time being. The neuro will monitor how things go along. MS is different for everybody. I think the problems with the ‘mild’ tag is the same as when they say it’s ‘benign MS’… you might think that you are making a fuss about symptoms which are really making an impact on your life… and as you have been to see a neuro I’m assuming you do have symptoms that have worried you.

For now, concentrate on coming to terms with the fact that you have MS. It is an emotional rollercoaster at first, so go with the emotions whether they be anger, grief, fear… or even relief which can also come up when you get dx.

Remember, loads of people live a very full and happy life with MS… and once you get over the first shock you will come to realise it is not the end of the world… AND HUGE advances are being made right now in both treatments and the chance of finding a cure. For the first time in MS history the future really is looking at advances that will end MS.

Take care… take it ‘one day at a time’.

Pat x

Thank you pat for your advice and kind words . Xxxx

Sorry about your news :frowning: I have to say though - I intensely dislike this new trend for neuros to tell people that they have ‘mild MS’. This is because there is no such diagnosis! Yes, people can have mild RRMS or mild PPMS but ‘mild’ is not a TYPE of MS. Telling people that you have mild MS or just MS is fine, but try doing anything official or medical with only that info and you may well struggle :frowning: Perhaps it will be clearer in his follow-up letter, but if not, do ask for the type of MS to be documented when you next see him (or before then if nec). Re fatigue: best thing would be to get the contact details of your MS nurse and give them a call. Different PCTs and neuro teams have different rules re meds. The two mainly used are amantadine and modafinil. Neither work for everyone unfortunately, but they are probably worth trying. Reading the MSS and MS Trust booklets would be worthwhile too - you might get done good tips in there. The one thing that consistently seems to improve fatigue is regular exercise. Karen x

Hi Karen, Can I take either of those with amytrip?? I The fatigue has returned with a vengeance and I really do need to get back to work soonish. Thanks Catherine

Yes you can. You should have no problem getting a prescription for amantadine, but modafinil isn’t supposed to be prescribed to new patients so it can be tricky. From what I know, they don’t do much for relapse-related fatigue though. They seem to be more helpful for everyday fatigue. Even then they don’t work for everyone :frowning: Don’t rush back to work too early. It’s more likely to make things worse than better. Check out the Equality Act. MS is automatically covered by it. Kx

Would my GP prescribe amantadine rather than having to go back to the neuro and would it help to pick me up. You say it doesn’t do much for relapse related fatigue which is what I am guessing it is coz before diagnosis I wasn’t this wiped. Well, in hindsight I had been for a while but that must’ve been the start of the ms. Sorry…so many questions!!

Your GP should be able to prescribe it because its OK’d for MS, but might want the go ahead from a neuro or MS nurse first. It kind of depends on your GP. Please don’t expect miracles from it though. Kx