Diagnosed yesterday so want to say hello!

Hi Guys!

So yeah, as the title says I was diagnosed yesterday after a very short time. I gather from reading some of the posts here that people have had very different experiences with diagnosis.

I had Optic Neuritis in late may (Bank holiday weekend to be exact) that lasted a couple of weeks and has now returned to about 80% it’s former glory. This spurred the Opthalmologist on to do an MRI, meanwhile my GP sent my neuro refferal based on this and many other health woes I’d accumulated throughout the last year or so which are quite obvious now other symptoms. My GP has previously run more blood tests than i can count chasing the cause for reccurent UTI’s and exhaustion which i was certain would turn out to be diabetes!

My MRI came back on June 28th and my neuro was yesterday. The report from the radiologist confirmed what we thought but as you may know, you need the neuros big stamp of confirmation!

In general I feel OK. I get fatigue a lot but it just feels like this is me. I’m a joke in the office with my yawning and stretching and eyes watering from yawning so much but it’s meant in jest as my colleagues don’t really know what to say and I’m certainly not one to dwell or be negative.

My legs ache especially after climbing a flight of stairs, I have to take a second to ‘recover’ for want of a better word. They twitch at times too. But the main issue is my brain itself. I’m struggling terribly with concentration and retaining information. I just don’t seem to understand the most basic of instructions. I wanted to start a blog but simply couldn’t figure out how to do one despite a million info points and tutorials, I gave up in the end. I tried to do a simple subtraction on paper last week and just couldn’t remember how to do it. This is bar far the worst symptom, I’ve always considered myself bright and have never really struggled with work or learning like this before. The Neurologist told me this is not going to improve which is pretty heartbreaking.

I’m waiting now on my Tecfidera delivery. No idea when this will happen and apparently I get an MS nurse which is good as I have all the questions ready.

Anyway I just wanted to say hello (sorry for the life story) and any advice will be greatly received!

hi ceetee

well i’d like to say congratulations on getting your diagnosis but that’s like saying well done for getting hit by a bus.

i don’t agree that the cognitive issues won’t improve.

don’t set your bar too high, do memory problems, logic problems and other puzzles.

good luck.

ms has affected my memory a lot especially when i’m tired.

then again lots of people my age (59) are the same.

tecfidera hasn’t taken long to arrive for me.

it feels good to be taking a powerful drug to kick my ms’ arse.

carole x

Hi CeeTee

I can safely tell you that you’re not alone… fatigue and brain fog are the main troubles for a lot of us, certainly for me. Memory not too accurate, whereas it used to be pretty good - my diary is my constant companion and every little thing I have to remember is noted down in it… appointments, things to remember to take to work tomorrow, things I have to do tomorrow… I send emails from my home to work email addresses, to remind me when I get to work that I have to do x,y,z first… one has to find ways round these things! Good luck!

Fracastorius (Jane)

Hi Jane,

A trick I picked up way back when my mind started to go was the post it notes on every surface trick. Different colours for new ones else I just stop noticing them! Trial and error I guess and I wil invest in a diary ASAP!

Hi Carole

Thanks so much for your lovely reply. Would you mind if I ask you some advice? My neuro did tell me this but obviously my brain has ditched that information! Can you tell me what happens re the Ms nurse? I think he said she would call me? What should I expect in that regard? Do i have to go somewhere regularly or are they more for support? I’m sure this info is all online but I like to ask real people

Caroline (ceetee)