Last reply 9 months ago
Question for those diagnosed young

So I have a question for those who were diagnosed with MS in their late teens/early twenties, more specifically, those that were diagnosed prior to having been able to stand on their own two feet (sorry, no pun intended) or finish their education/start their career.

How did the diagnosis change your plans for the future? What stage of your life was the diagnosis made (i.e A-levels, uni, job hunting) and do you feel your life was impacted immediately after the diagnosis or did it require the MS to get much worse before it had a significant impact on your life?

For those of you who are now past your early twenties and have managed to establish a career I’d very much like to know how having MS changed what your plans were (if at all) and, if it is not too personal a question, what you find yourselves doing now job-wise.

I ask these questions because I was diagnosed last year at the age of 20, but my first symptoms were at age 18. I am currently either going through the longest relapse known to man (16 months and counting) or I am transitioning over to SPMS or I just have some weird issues that aren’t being resolved. Either way, MS has had a HUGE impact on my life and I can barely walk, I’m not eating (just don’t feel hungry + nausea) and my cognitive abilities have been hit for six, plus a whole bunch of other things.

My entire life I’ve been a high flying student, going to uni with all A*s on my record since GCSEs, but now I am struggling to face the reality that I am a shell of what I once was. There is a big chance that I fail this year at university (it’s a shame since I completed first year with 80%) and am put out in the real world with no qualifications and a disability that makes me the least desirable job candidate since The Grinch. I clearly have a lot of doubts and concerns regarding the future, and at the moment things don’t really seem to be looking up for me.

Any advice and encouragement for this lost soul would be most appreciated, and if anyone is feeling like sharing their own story I think that would be really great! Thanks 🙂

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9 months ago

@eigenhater , I haven’t got a comparable story to give you, but I do wonder what the medical profession are doing to help you?

9 months ago

@stumbler , no worries I appreciate your support on here always.

To be completely honest, I think there isn’t much the medical professionals can do now and it’s more a question of what they should have done 3 years ago. Unfortunately I haven’t been put on any DMTs yet, even though I hear that loads of people go on a DMT straight away even if it’s just a single mild symptom or even if they’re still CIS.

My hospital has just had a new neurologist replace the old one and apparently she will discuss DMTs at my appointment in April, although I’m not sure what she’ll say seeing as my recent MRI was “stable”. Also I sometimes wonder if it’s even worth it at this point as it’s not really a cure for anything and just halts progression/disability (got enough of that already, what’s a little more, I say) – but I guess we’ll have to wait and see.

9 months ago

I’m also not in the same camp as you as I am old 😂 47 now but was diagnosed last September aged 46….I was offered treatment at the same time as I was diagnosed and started Lemtrada in November 2017. I understand how devastated you must feel, but MS isn’t the disease it once was and there are some really effective treatments out there. If you start one and it stops any more progression then it’s down to you to build up from that baseline….with a more positive outlook. Draw a line in the sand and start from now. Go to the gym, work on building stronger legs to help you walk better. Eat…not eating won’t give you the energy you will need to get strong. Look after yourself and remember…this is your life….you can rebuild it to a better place. Good luck…

9 months ago

9 months ago

@eigenhater , being on an effective treatment to control the condition, will give your body the respite it needs to set about trying to repair the damage already done.

You have age on your side, so you should have the neuronal reserve to try and effect this.

If you aren’t getting the treatment you need, it is your prerogative to request a second opinion. You are permitted to have this at a Hospital/ Neuro of your choice. And you have a fair choice being in London………

9 months ago

@eigenhater you are young and sometimes things can take months or years to get better, but they really can get better. Get on a really good treatment. At your age you will do well once the MS is at bay because you body can heal. Dont give up!

9 months ago

I am 18 and got diagnosed in December, it really hit me hard and I am putting school off for the moment, this summer i i tend to take some classes but not too much because i do not want to overwhelm myself however i know i need to still push myself still anyway because i don’t want this disease to run my life, i won’t let it.

9 months ago

I was diagnosed at 19 first symptoms at 16. I first had RRMS I just carried on with working full time and there were times it was difficult but I some how got thru. Slowly got weaker and balance and drop foot got worse.

Still go do what you want to do you just may need to alter the way you do it. There is always a way.

9 months ago

This is tricky but you are not on any treatments at the moment and they do make a massive difference when you get on the right one and you are not being buffeted by horrendously high inflammation which incidentally makes us depressed and fatigued you will feel less in despair. This is just the beginning of your journey to get treatment and get sorted. I am not sure about your family situation and whether you have parental support or are going it alone but if you have family who can help you – let them give you a hand now to access treatment and do all the hassling while you are not well.

Have you accessed the student welfare team at the university? You can get a bunch of support as a student with a disability. I’m in student welfare so I come across students all the time with life changing illnesses during the university career. It isn’t the end of academic success. It may be that a pause is needed so you can achieve at your potential. Again rally your supporters – can a friend help you access services if you are not well enough. We do phone and email as well as occasional home visits especially if you are in halls.

And about that career – students with disabilities at the Uni l work for have the same employment rate as students without disability because they have had support and reasonable adjustments and because they know they have to hustle with a good degree. It’s not all doom believe me – it is harder but not impossible.

Please try again. It may seem at the moment that things are not going to plan but I recommend you put that A* brain to work to solve the new circumstances. It is possible – check out the MS websites for success stories.

Ps I am older but I am still working and I got a new job post diagnosis. A good employer supports diversity and keeps the employment laws. MS gets a special mention in the Equality Act 🙂

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