Hi everyone.
Im new to these types of groups but not new to MS.
My father passed due to complications surrounding MS and i was officialy diagnosed in 2016, i had my first attack in 2010.
I lived in dubai 2011 to 2021 and during this time saw some great neurologists and had a lot of advice but i also did a lot of research.
I tried a few medications but settled on the vitamin, food route and got used to sporadic numbness and tingling and just lived with MS until now.
4 weeks ago i started with sciatica like pain in my right let, ive been doing exercises which helps on some days and not on others, my arms are weak and the numbness is worse at night my fatigue is also a lot worse than ever before and my UTI’s have started again which ive always sufferened with.
My family are now concerned and this part is hard to deal with as you can see the pity.
Im a business woman and very busy with lots of responsibilities, i have a neurology appointment tomorrow, i havent seen someone for 2 years as uk care isnt as good as care in dubai and coukdnt be bothered with the negative comments so i was coping alone but now i need support.
Its hard.
Hi Paula,
Very similarly don’t normally go for groups on the internet.
Do you have an MS Nurse you can talk to? That would be my first port of call.
It’s fairly surprising they haven’t been in contact. The only thing I could think is maybe as you’ve been so stable they waited?
Ocrevus might be something to discuss. I’d start with them though just say about the change you might score some physio out of it too. I tend to, stupidly, stop mine just from work pressure. Changing that now though.
Look after your star player, you (anyone who knows me would know I’m totally the worst at that). We both should* realise though without fighting for as much health as we can get we’re no use to anyone else anyways.
All the very best,
Andrew
Edit: *typo
It is painful when MS starts demanding our attention after a period of relative stability. For me that feels like being diagnosed all over again.
I hope that you have a good consultation.
Thanks Andy for your support its very appreciated.
No i have no MS nurse, on my one visit to the NHS neurologist he said there was support and he woukd put me in touch but he never did so i dont know who they are.
I have my next MRI tomorrow so at least i will see whats going on, my mood is a little better which could be due to the fact that ive started HRT patches as ive tried everything due to so many symptoms this time…once i can see if i have more lesions at least i can work out a plan.
Im wondering what medications are good these days, do.you have any advice on that?
Anyway less about me, what about you are you living with it ok??
Thanks alison, yes thats true! I thought id escaped… now its starting again 