Recently diagnosed (kind of)

Hello everybody, I think this is the first time I’ve posted in a forum for 10 years, let’s see how it goes. For the past 6/7 months I have struggled badly with balance, some days I’m okay, some days it looks like I’m walking on eggshells, being a man (a stubborn man) I just got on with it, it wasn’t really affecting my lifestyle and I could live as normal. One day I took my grandparents to Southport, the balance and walking got really bad and I decided to visit my GP the following day. I went, I sat, I spoke, I was told it was vertigo. It seemed about right after doing some online research, I was given something to take and I thought that was that. To cut the story short the medication I was given did nothing, my balance was as bad as ever and my legs seemed to just give up. I finally got referred to see a neurologist who then referred me to Walton hospital for further testing after giving me the once over. In all the times I saw him I seemed to be getting worse every visit. Added to the balance and walking issues my bladder seemed to become a sieve and the odd time my short term memory would disappear from me. Last week I got admitted into the hospital after all the testing was done. I saw about four or five different doctors whilst there and each came back to an MS diagnosis. My girlfriend mentioned MS to me several weeks ago and after reading through everything I would of been more surprised if they told me that it wasn’t MS. And here I am now, waiting for the final diagnosis to come in, I had the joys of a lumbar puncture whilst in hospital and that will help with the final diagnosis (crossing the t’s and dotting the i’s as the doctor put it) and once that’s confirmed I start my treatment course. The sheer fact that I finally have a diagnosis feels like a huge weight has been removed from my back and I currently feel so much happier. It’s a long road ahead for me but it’s one that will be tackled with positivity and confidence.


hi kris

i totally understand the relief of diagnosis, although it’s not a pretty one!

your positivity will carry you through, but you have to work at it.

make plans to do something you enjoy at least once a week.

on my down times i can just say to myself - wait until next week and the meet up with old mates or wait until september and the festival you bought tickets for.

good luck

carole x

With it all being so new and just getting to grips with everything my outlook is very positive currently. I’m sure as the months and then years pass there will be times when I do feel alone and scared but your idea of planning special events every month is a fantastic one. Luckily for me, February is just around the corner so I best get thinking of something to start me off in style :slight_smile:

hi again

the festival number six at portmeirion have fantastic help in place for disabled.

book disabled camping and this allows you to take your car into the site.

cars are not usually allowed.

they have inclusion officers who will do absolutely anything to help.

they give their mobile numbers to the disabled campers. one day i was talking to one of them when she got a phone call.

a lady had gone out in her self-propelled wheelchair, gone way too far and was now stuck on the other side of the site with no strength to get back.

the inclusion officer said “no worries sweetheart, be with you in 5 minutes”. jumped in her landrover and set off. 10 minutes later she arrived back with the lady and wheelchair.

on top of all that, it is the most beautiful place you could wish for.

it’s where the prisoner was filmed, if you are old enough to remember that.

it’s in wales, not far from aberystwyth.

i went to the first two festivals there but had to miss last year.

take a mate with you and he will get in for free as your carer.

carole x