To ask what most people think a disabled person with MS looks like?

I'm sorry you've experienced the dropping off of people. However this isn't a universal experience, so you shouldn't state it as such.

Also there is no cure for MS.

Don't feel sorry. At least they know that while they may not be able to visit many places, at least all the non binary folk who couldn't get out before now can. So it's not all doom and gloom.

I do occasionally spike the disparity between the amount spend on trans rights one way or another and the amount not spent on the less able, but many years history of posting on MN (most as other people) has demonstrated where peoples priorities lie. And this is pushchair pushers asking the bus driver to move "that person" in a wheelchair so they can get on.

The worse the MS gets, the fewer people you will know. It's bad to get it later in life as all the people you though were friends fall away over the months and years (it will start with them forgetting about accessibility)

So sorry to hear that 😞

An uncle of mine had it, it mostly affected his speech, which was permanently slurred - he had actually been a bit of a drinker before getting ill, and many just presumed he was drunk. He found this very frustrating.

I have had two people in my life with MS and they both had progressive MS, so just steadily got worse and worse rather than ever having a good day. One died a few years ago after living with MS for about 15 years. The other has had it 15ish years now and is finally having to accept she's a full-time wheelchair user.

However, about 20 years ago I met a 19 year old girl in a nightclub bathroom who had MS. She came across as being perfectly fine at the time, lively and bouncy and just enjoying life. The week before she'd only just recovered from an extended period of being bed-bound.

I'm sorry for everything you're going through, I know how incredibly difficult it all is. Sending you strength

The problem is most people don't know what somebody with ms looks like. Why would they, unless they already knew somebody.

The worse the MS gets, the fewer people you will know. It's bad to get it later in life as all the people you though were friends fall away over the months and years (it will start with them forgetting about accessibility). However if you are unlucky enough to have it early, then you can have a lonely time - the internet and social media does help in a way. But you can end up in a crowd of similar.

I read a short story years ago of someone who had MS and devoted their life to a cure. Which they found. After it was confirmed as working they were expected to take it, but the refused saying the MS had given them the gift to see people as they really are. (My friend found it ....)

Oh was diagnosed in 2014 had to take medical retirement 5 years ago. Came out with me for a 30min dog walk yesterday (would have taken me 10 aline)and been in bed since. He gets higher rate mobility and care we found a lot of help online to fill the forms in

The problem is most people don't know what somebody with ms looks like. Why would they, unless they already knew somebody.

Also, the symptoms are very wide ranging.And there are too many variables

My cousin occasionally uses a stick. Other than that, i'm not sure you'd know she had it. Using a stick could be anything.

Thank you ❤️ genuinely

I hear you, I wish I hadn’t read this thread either!! I have MS, nearly 10 years since diagnosis and I’m basically fine, as long as I don’t overdo it but I have two young children and a very busy stressful job so sometimes I do get fatigued. Mine is well managed by DMTs and I try not to think about it to be honest, I don’t think there’s much point crying about what may or may not happen when I’m ok now. I wish you luck (if that’s the right word) with your diagnosis.

You do not need to justify the use of a disabled bay if you have a blue badge. I can imagine it’s really stressful though as I’ve seen enough videos of people with hidden disabilities being harassed and harangued by others.

RRMS can become secondary progressive (no one knows why). From then on each relapse isn't remitted and there is a downward spiral of functionality.

Disease modifying drugs may stave this off. It's an open question.

I have ongoing fatigue with my RRMS that persists regardless of whether I’m in active relapse or not. This can mean I’m fine when I start a shopping trip, but I’m struggling by the end. That’s why I use disabled parking bays. (Also, when I do relapse, I’m in a wheelchair so I’m not questioned then.)

If it's relapsing MS I would expect the person to be anywhere from looking totally well or walking with a bit of a shuffle or walking with sticks or using a wheelchair or in a wheelchair being pushed by someone else.

If they are getting on grand with walking I would expect them to leave the disabled bays for someone else and then use them when they are struggling a bit.

I used to work with someone with MS. For the most part "she looked fine" to everyone but her MS meant she tired easily, she would lose sensation in her arms, her eyesight would worsen and at times she would struggle to walk far. People really misunderstood her condition sadly.

Well, obviously because antibiotic-resistant MRSA and other pathogens would ultimately kill millions if the current situation of increasing antibiotic resistance goes on. No operation in hospital would be safe. We'd effectively be back to the days before we had any antibiotics.

And that’s the key to it. If they can find something that has already got FDA approval then things move really quickly. Thing of the weight loss drugs so many of us take now. Five years ago we wouldn’t have believed there would be a medication widely available that actually worked nor would we believe it wouldn’t have been caught up in a decades worth of testing.

Of course. And amen to that. But let's be honest. Even if a cure (which means preventing and reversing disability, so already that is a high bar) were to be discovered today (it hasn't) then it would be 10-15 years before we could even dream of it being available as a recognised treatment. And that assumes the current framework for medicine continues.

The best hope for now is to re-examine existing (i.e. cheap) drugs and see if any of the side-effects from their primary design may actually help with the effects of other diseases. Like antivirals for MS fatigue.

None of this is my field of expertise. I'm a tech nerd. But I try to help friends.

The nasty cynic in me wonders why they cured an STI before MS.

Because when we are struggling and we hurt it’s hard to believe there’s any light at the end of the tunnel but I really think there is. Neurological conditions are all under an umbrella and they are making progress with Parkinson’s which in turn will help with conditions such as MS.

There was every need to be rude as you literally fed into the whole narrative of the thread which was people not believing those who have (hidden) disabilities snd having a preconception of what a chronic condition should look like. Apology accepted.

I am fully aware they time will change things and the older we get the less ability we have to keep illness at bay but I’ve chosen to be positive. I have relatives in the pharma industry that tell me all sorts of interesting things and like I said, I think AI will be hugely helpful with healthcare going forward.

https://www.bbc.com/news/articles/cgr94xxye2lo

It's already happening

I am tended to believe it when I see it. I was thinking back in the 90s that being able to crunch large data sets would get to the nub of things (people who know about John Snow would know why).

There is a very long list of things for "AI" to solve when it actually works. So even then we may have to be patient.

I don't think I'd make a very good consultant.

Depending on how severely the MS is affecting the individual and in what phase it's in, they could look completely well or profoundly disabled.

When I was a nurse, I nursed MS patients who were so disabled they couldn't feed themselves or do anything without help.

I also nursed a woman in her forties who had had MS for 20 years and was still a serving police officer (albeit on light duties). She only needed medical attention and nursing care during relapsing phases.