The Waiting Game...

Hi! Four years ago I was referred to neurology as was having trouble walking, brain fog, forgetfulness,was tired, had a couple of falls and sharp sudden pains in my legs. Had MRI, 7 lesions. Then LP - negative. I was dismissed from neurologists care as I had ‘made improvement’, no diagnosis and the only thing ruled out was Lyme Disease. I had a fairly normal life for 4 years, until 3 weeks ago. One day just couldn’t do anything without nearly collapsing with exhaustion. I have never felt tired until this! Have to go for a sleep after shower. Take rests constantly. Gradually over the three weeks all symptoms are back but worse :frowning: this time my neck and arms (particularly wrists) are aching and I’m getting sharp pains. My speech is awful, I sound drunk. I can’t find words although I know what I want to say. So back to GP who has referred back to neurology. Anyway my question is, if it is MS, is it normal to be in remission for so long then suddenly it just happens again like that? It’s weird, first time round I was so scared. This time I just want answers, I need to know what’s going on.

i can’t answer your question because only the neurologist can say if you have ms.

go to your gp and request a re-referral to neurology.

tell the gp about your symptoms and ask if there is anything he/she can prescribe to help with them.

start to make notes of what you want to discuss.

i always take a ‘shopping list’.

my gp asks if it is really a shopping list or a shipping order!

I have been referred back to neurology by Gp. She didn’t offer anything for the pain, it’s been pretty bad last couple of days so going to see if I can get appointment today. I just wondered what people’s time span between flare ups were,4 years seems quite a while. Took a list into initial appointment so I wouldnt forget anything. Got family to add things they felt I had missed or that were important. Keeping a daily diary to show neurologist when I get there.

The thing about MS is that there is no ‘normal’ for everyone. MS is a sod of a disease that’s different for everyone. So, yes, it’s entirely possible to have one attack, then nothing for months or even years. Equally, some people have relapse after relapse.

You should be aware that while most people with MS test positive for O bands following a lumbar puncture, up to 20% of people don’t have O bands.

Keep going with your diary. It all helps.