This may be a silly question but.......

I was just wondering, do your symptoms vary over the day?

The tingling in my hand can be bad at times and then the next minute I can hardly feel it at all, The same as in my cheek, yesterday It was driving my nuts, today I can pretty much ignore it - although still there,

Also another thing - sorry! - I feel like I have been punched in the eye! It feels swollen heavy (it looks and feels normal) my vision is a little blurred in this eye, and things don’t look ao sharp, does this sound like ON to you guys? It’s been going on a few days, starting to stress about it.

Sorry if this seems trivial.

Hi Reebe, My main symptom currently is a loss of sensation in my feet (can still feel but is numb as well) left one is a little worse but this has been constant for nearly 2 months now. The sunburn type feeling comes and goes in my left leg, but is always in my left leg. I haven’t experienced problems with my eyes, only my eyesight which is down to good old ageing!! I hope your eye feels better soon. Sam x

My symptoms follow a diurnal cycle - being worst in the afternoon - initially I thought it was about getting tired but I get much better about bed time. I think it is caused by room temperature - summer weather raising room temp in the afternoon). Also if I get hot (actually, generally I’m not hot because I avoid it, but situations that you’d expect might cause me to get hot, exercise, being in the the sun etc) bring out symptoms. I get prickles on my back only if I get hot.

ON is associated with pain and so is blur so it could be ON - or many other problems I suppose. You would have to see an opthalmologist - your GP or an optometrist can refer you - there may be drop in clinics at some hospitals.

When I’m relapsing, my symptoms are there 24/7 although sensory symptoms tend to be more noticeable in the evening.

When I’m in remission, my sensory symptoms are still more noticeable in the evening, but they also vary with what I’m doing (e.g. they are worse if I’m hot or have been overdoing things), my mobility symptoms are pretty consistent (although I have bad and better days) and my fatigue is usually worse in the afternoon.

We’re all different though!

Karen x

My sensory symptoms tend to be noticeable more in the evening or when I’m lying down - I guess I’m less distracted so more tuned in on what my body is doing. Tiredness, heat tend to make things worse. Stress and illness also also seem to aggravate them. Everytime I’ve had a new epsiode it’s always started off with a reflare of pins and needles in my L leg which usually does go once I’m on the mend. However since I’ve had whooping cough it’s been a bit all over the place and then the last weeks been rather stressful so I’ve had some of my old lip chin and face numbness come back with the hot, itchy, crawly sensation on my head.

The motor symptoms - bladder and bowel issues, bowel was fine after first flare up really. Bladder isn’t hundred percent I tend to need to pee more frequently nowadays and tend to get up more at night too and control doesn’t feel great but on the whole stable.

Fatigue - I only seem to get when I’m going to be ill. It hits me a week before and I feel as if I’m battling to get enough sleep but just can’t. The only other time is when I’ve over done it and then I know I need to take it easy and tends to occur more in the early evening - I call it the eight o’ clock slump.

I guess as Karen put it - we’re all different.



Some symptoms can be ‘paroxysmal’ i.e. they come and go. These links might help you get your head round it:

Interesting articles! Thanks for sharing :slight_smile: