Reading over different posts has got me thinking about the lead up to my own diagnosis. MS wasny something that was even mentioned until after my MRI brain & back scans. I hadn’t even heard of MS, didn’t have a clue what it was.
Right enough it was 18 years ago and I was turning 18 that summer. I had different priorities, Google wasn’t the widely known tool that it is these days then.
I can’t help but notice how many people that don’t have a diagnosis openly talk all about ms symptoms in the exact medical terms used to describe them. They’re able to get MRI scans and regularly see different neurologists/ms specialists.
I’ve only ever had the 2 MRI scans. I don’t get a 6monthly repeat scan to “double check demyelination”. I don’t get a yearly scan or even a decade scan.
I’ve got ppms an have been from day one. I’ve got to suck it up and get on with it. Yes there’s medication that definately helps me along the way. Without which I don’t want to imagine! Can’t help but feel sometimes though that we’re almost left like a lost cause as we’re ppms.
Before people start to get narky, I’m not attacking anyone, I’m just using the ppms forum to have a rant about having ppms and sometimes things just get a bit much.
Hello Lib,
Rant away, you’ll get plenty of understanding and support on here, especially if you want to ask specific questions. A lot of us also stranded because of the PPMS diagnosis. I haven’t seen a neurologist for over three years although the last time he did actually arrange some physio sessions which weren’t disrupted by overworked practitioners and inefficient administration.
On the positive side, my local MS branch are very active and supportive and will get involved with any issues if you want them to.
It seems very unfair that you were affected at such a young age and I’m not surprised you appear somewhat hacked off. If you’re feeling the need for further testing or analysis, it might be an idea to get on to your GP or MS nurse if there is one. I’ve found that GPs like us to be quite specific when describing any new or ongoing issues. As a result I’ve had a lot of focus on some of my symptoms although I do get a bit fed up of attending different hospitals. All I can say really is that there can be some help out there if you want it. The symptoms section of this website is good for helping with using the best terminology to describe our symptoms.
Hope this helps, best wishes, Steve
I know what you mean Libertine no one can do much so it feels like we are left to get on with it. I have just had my second scan in twenty years. Still there aint much they can do for us and we know how to get on with it. I think it is the short days and without much sunshine we are all due a rant.
Don
Cheers for letting me rant. Was just having a meh day and a good bit of “it’s not fair!!” going on aswell.
Stevie snorey - I’ve got good support from my local physical disability team. I’ve been on their books from almost the beginning of this ‘delightful’ journey and it works well. They check in on me few times a year but I’m able to contact them whenever I have any concerns or I feel the need for physio or to see OT about anything. It’s an invaluable service and in that respect I’m lucky, compared to how some people can’t get to see physios etc. I really shouldn’t have been ranting I suppose, but it was just one of those days. Cheers for your reply though man!
Don - I’m thinking a holiday in the sun, sitting relaxing having a few beers would make the all the difference. Fancy it? I’ll get the first round of drinks!
I know how you feel libertine; that crushing sense of isolation, the ‘see you in a year’ breeziness.
The symptoms are so many and varied that it often does my head in, literally, just thinking about it.
Chin-up
CP (oh, and mine’s a pint of Peroni)
Clucker you’re on! Flight leaves tomorrow at 6pm, it’s all booked an ready for the off. Oooh an ice cold pint of peroni… Mmmnnn
Oy! Wait for me, I’m packed and ready see you at the airport!!
Pauline x
Don’t ever be afraid to rant Libertine. We all have those days and it’s a reason I think we have a PPMS section in the forum. There does seem to be differences in the care packages for those with RR and us and I get upset sometimes too on forums hearing about all the new treatments being brought out for them and while I’m glad research is being done, it’s a bit deflating getting the “there’s nothing we can do, see you in a year” speech.
Please don’t think I resent anyone, I don’t need a row, it’s just a statement of fact. I also feel a bit envious at times listening to my friend tell me all about the wonderful ms centre in her area where they offer loads of services and although I have a lovely Neuro and nurse we have nothing like that where I live. Hey ho, at least I live in the beautiful English countryside!!
Take care.
Cath x