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in my 20’s terrified of being bedridden

Hello,

I am currently in my early 20’s and undiagnosed but my symptoms look to be indicative of PPMS. I’m terrified that I’m going to be bedridden, not be able to eat or talk etc. I can deal with not being able to walk (though I know it’ll be awful to go through it) but the rest I just can’t deal with. I accidentally stumbled upon a carers post on here and saw many people talking about caring for their parents, a lot of them had been diagnosed at early ages (18-24) and all of them were in a horrible condition. It seems like the earlier you get this disease the worse you will end up. I am terrified of this being me and have even considered taking my life so I don’t have to.

could anyone tell me if it’s generally worse for those who are diagnosed with PPMS early on?

Hello,

You’re jumping the gun aren’t you? You haven’t even been diagnosed but you are terrified of what your life with MS will be like in ten, twenty, thirty, forty years from now? I’m in my 60’s and if I knew what lay ahead of me when I was twenty I’d might never have gotten out of bed. As it was, I took each challenge and tackled it with all the skills I had been taught or character I had been born with, to the best of my ability.

My advice is to stop reading about the minority of dismal information regarding MS and develop an attitude that reflects your abilities and potential. You only have to dream to achieve. Give in to your nightmares and you’ll never get out of bed again.

Regards,

Anthony

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Very good advice from Anthony. You haven’t even been diagnosed yet! You’ll need to take each day as it comes & deal with it…if you do indeed have MS.

Try not to jump ahead & try to be more positive, not always easy I know. Worrying will only make you feel worse & who knows? Maybe your diagnoses won’t be as bad as you’ve convinced yourself it will be…

I think the thing with being diagnosed early on is that you’re younger so even if it didn’t effect you to that extent until 30 years later, you would still only be 50 which is when a lot of people get diagnosed so that’s why it affects younger people worse. They have more time to worsen if that makes sense.

I have PPMS; I think; as when I was first diagnosed; when I was 23 years old; there were no different types you either had MS or not; I am now 70. My diagnosis rests on the principal that I had one attack and just a very, very slow decline since.

Yes; I use a wheelchair but that has not stopped me. In fact, if you search Google for lovocco it will give you an inkling of what my fantastic life has been.

You could be the same; MS I realise can be horrible if indeed you are diagnosed; indeed if it is PPMS; but it could be just a dropped stick in the Bayeux tapestry.

Great Post Anthony xxx

Anon most 20 year olds i know (grandkids and their friends) are bedridden, they love their beds and stay in them most days lol.

ok kidding apart. I cant add much to the above answers except this.

Why at 20 are you focusing on what is mainly an older persons disease? PPMS is found to start or present mostly in older people late forties.

Yes exceptions to the rule as always as some younger people can be diagnosed with it, but its not normal. At 20 lot present with clinically isolated syndrome, or RRMS.

either way, I am 68 with PPMS and probably had it minimum 20 years and I am not bedridden and I am fighting never to be. I have a good life, and enjoy what i have, i never think about my illness in the day far too busy messing about with videos of wildlife, annoying people in my sheltered accommodation, taking my dog out, and watching some fab stuff on amazon lol.

My grandson is 21, he has several freinds all the do is sleep all day and play games at night. what a life.

So stop googling you dont even say why your here, what are your symptoms, why do you think you have MS etc?

at 20 I was on my way to germany to be with my husband in Munster. Not worrying about my health.

You obviously need help and are anxious about your health, but you need to step back wind back and start from the beginning ok hun? hugs. xxxxxx

I’m focusing specifically on PPMS as the pattern of my symptoms wouldn’t make sense with RRMS. My main symptoms are a fine tremor, muscle spasms / twitches, pins and needles / numbness that I get every day, cloudy vision after waking, incontinence issues, back and leg pain, foot pain after walking for not even long at all, burning feeling in patches on my skin, double vision in my side vision. Ive had these for 4 /5 months and have had all my bloods done - they’re fine. I am aware it’s an older persons disease but it does occur in younger people and yes I’m an anxious person and shouldn’t google things for that reason. But, I have overflow incontinence which is usually to do with MS in women, there’s few other things that can cause it but they don’t make sense to me. My symptoms didn’t come on in an attack either and then slowly get better so that’s why I think I have it.