95 per cent certain

Saw neurologist today and he’s 95 per cent certain I have MS. Had a brain MRI and he showed me the affected areas. No medication because he says the side effects are really bad and my symptoms might improve. My symptoms are wobbly legs, pins and needles in feet and hands and being off balance. My foot goes numb in the evenings and I have spasms. I’m having an MRI on my spine next. I was hoping he’d be able to give me something so I’d feel better but I can see why he didn’t. My fatigue is much better than it was and even though my legs are sore and wobbly I can walk. Has this happened to anyone else? How did you feel? Did it get better?

Hi there,

I was diagnosed around 3 years ago and have exactly the same symptoms as you describe (without the spasms) - they come and go, I havent had any medication. I thought while I could cope with the symptons I wouldnt need the medication. I have been very fortunate and I hope you are too.

Good luck with everything

Jane x

Hi Jane Thanks for responding. It’s good to know someone is out there that understands although I’m sorry you’re going through it as well. It’s also good to know you’ve gone 3 yrs without needing medication. It gives me some hope, it would be great to stay off medication while I can. My legs are wrecking tonight but maybe they’ll feel better soon. Thanks again. All the best to you. Ann x

Not sure I agree with the neuro about the side effects - we don’t all get side effects and they usually wear off anyway - but if there are signs that you are going into remission, I guess it’s probably sensible to wait and see what symptoms are left that you need longer-term help with. But if you are struggling at all, then do get onto the neuro’s secretary and ask for help.

Will things get better? Tbh, I really can’t tell you, but if it’s RRMS that you have, then the chances are very good. Unfortunately it can take a long time for things to get as good as they are going to get though (up to maybe 18 months), so try and stay hopeful.

If you’re having a spinal MRI soon, then I assume that you’re also going to be seeing the neuro again soon, so you can always bring up the subject of meds then if you need to. Don’t be afraid to be assertive - if you need something, then you need something - and it’s you who will have to live with the side effects, not him!

Karen x

Thanks Karen that was really helpful especially when you say it could take up to 18mths for things to get better. It’s only been about 10 weeks but I was already worrying about still having symptoms and maybe they would never disappear. Yes I’ll be seeing the neurologist again after the next MRI scan so I’ll be more assertive if I’m still in pain. Thanks again. All the best Ann