Hi Kris
I’ve just joined this Forum, and yours was the first post I read.
I guess, I will use this a bit like Facebook. ie. every now and then, but I do like a chat, so here goes.
Being in your 30’s I can hear what you are saying about the frustration and issues.
I was diagnosed about 18 months ago with PPMS. It hit me hard, as my Dad suffered with it, and I watched the decline over a ± 15 year period. Whether that puts me in a good position, I don’t know, but my Mum is a good source of info if I need it.
To be honest I don’t ask a lot, not because it’s upsetting, but because we are all different, and the way I conduct my life is different to that of my Dad.
Telling my Kids and Mum, was the hardest part, but after that, I just get on with life. Maybe I’m lucky that I am a very positive person, otherwise fit, healthy and in good spirits. Also, it helps to have good friends.
The Neuro reckons I could have had MS for 30 years, and could have got it via a virus, at the same time as my Dad.
No one really knows.
I thought my initial symptoms were down to my having so many motorcross falls over the years, until a young physio at Beford hospital suggest I see a Neuro. I guess he didn’t want to commit anything. Bang came the news.
Now I know why I walk with a limp, why my balance isn’t great, why I have ‘foot drop’, and struggle to mow the lawn, and need to know exactly where all the toilets are, and way I need to be careful of caffeine.
That all said, I love cycling, and can still do a 100km Sportive, and loads of other outdoor activities.
I’m 52 now, but do all I can to stay positive, and keep the weight down, although I do enjoy my food. Luckily i’m around 75kgs, so not too bad.
My biggest struggle is walking distances, and stairs. It’s carrying your own body weight that becomes the problem, so keep fit is my biggest tip, and remain positive of course.
Stay away from caffeine ! Nightmare for the bladder, but I find salt intake helps. You need to keep hydrated, so milk is a good one. It’s a good recovery drink too.
Activities withe kids - Cycling & Swimming (Not weight bearing).
I could talk all day about this, so if you want more let me know.
To sum up what I’m like - I knew walking was going to be an issue in future, and I know my Swiss partner loves her walking. We did a HF Walking holiday in Corsica last year, and I just said, when I’ve had enough, I’ll have a days rest. No probs.
3rd day I realised I was struggling so took a rest day. When my partner returned that evening and asked what I had done - sleep, beach, eat & drink etc.
No sweetie, a 70km cycling. She went ballistic !! I was properly knackered then 
Keep smiling, you can’t beat it… yet, but there is an awful lot to enjoy.