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Can I ask what your first symptoms and progression speed were?

Hello there all,

My name is Callum Hurley, and I’m a 24 year old make who began having neurological problems about a month ago, and now seems to be developing Primary Progressive MS. This has yet to be confirmed, but for over a month now I have had a subtle walking difficulty in my right leg, what might be optic neuritis in my right eye, urinary retention and spasticity in my bladder and various twitches and numbness in my arms.

Could I please ask what everyone’s initial symptoms were and how they developed from there? I understand that presenting like I have, with urinary problems and symptoms all over the body, is considered to be a very bad sign even by PPMS standards. Does this sound like it is definitely PPMS? Could I expect to become quickly disabled? I am terrified of this disease and want to get a handle upon what I might expect to happen, as I have long since decided upon pursuing a euthanasia route if life is simply going to become impossible.

Callum

Hi Callum,

so sorry you are clearly in distress. PPMS can take years to diagnose . In the US MS is sometimes referred to as the snowflake disease - no two are the same.

use the website for info, there are also lots of very informative leaflets. There’s also a helpline if you want to talk to someone.

good luck.

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Hello, Callum.

I’m sorry that this matter is so worrying to you. The first thing I should say is that no two cases of MS are the same. I’ve have been diagnosed with PPMS since March 1994. Before that, I was visited by some initial symptoms. Firstly I had a general feeling on numbness down my left-hand side (1983) Then some tears later, I had spasms on my right. (1987) After that, walking began to deteriorate. It was very gradual and didn’t affect me significantly until I finally went to the doctor in 1990. On that visit, he took all my bloods but said there was nothing definite. Then in 1993 I went again and was referred to the neurologist. Since then it’s been a gradual thing. I finally had to stop working in 2012.

As I mentioned, no-one is the same. It may be very different for you but I hope ths gives you some insight.

My very best wishes, Steve.

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Hello Callum,

I just wanted to say hang on in there mate and welcome to our lovely forum, Im probably not the best to advice you as i’m still undiagnosed, but all i can say is never assume the worst, even if it is ppms there are people on here that are amazing and still even though disabled by ms have a good quality of life. Sometimes the things that we think we couldn’t cope with in life we surprise ourselves and do far better than we would have thought. For me being in a wheelchair was unthinkable! that was never on my agenda!..but 2 and a half years on iv’e learned to adjust, I have a fantastic assistance dog called Frazer and a Family that love me… I can’t change my health problems but I needed to change my outlook, I still have down days and sometimes get scared or feel very sad, but i’m so much better than I was at the beginning of this journey. Understandably you are scared, but don’t see it as the end, you are so young and regardless of what happens next. you have a life to live and you will be able to enjoy it and make a difference to others as well.

Michelle x

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Hi Callum,

Firstly welcome to the forum, you’ll find so many helpful and friendly people here, it was a life saver for me!

As Steve says no two of us are the same…I had my first symptoms at 14…I will be 64 next week…the first symptoms were Le Hermittes sign followed by several bouts of optic neuritis. I do use a wheel chair when I’m out of the house but I can still get around in the house, even after 50 years. My walking has improved tremendously over the last year due to taking LDN and Biotin.

Because none of us are the same you can’t foresee what is to come. My advise is to enjoy life to the full and try not to spoil your life by worrying about what might be. I know that sounds easier said than done but it really is the best way to deal with this wretched disease. There’s a tremendous amount of information on this website and also The MS Trust.

I do understand your thoughts of euthanasia but please Callum …you could have years of happiness ahead of you before you need to think in those terms…you may in fact never need to think along those lines. There are also times that MS can plateau.

Many of us lead lives that healthy people might think a little sad but you know you do find ways to live and enjoy the life you have. One or two of us on here use mindfulness as a way of coping…you might like to google it and find out more.

The MS helpline is also very helpful…you’ll find people on the other end of the line that will be very sympathetic…the details are at the bottom of this page.

I do hope you will come back on to the forum if there are any more questions we can help with,

In the meantime take care of yourself,

with my very best wishes,

Nina X

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Hi Callum

You are bound to feel worried, everyone does in the beginning, but please do not think of all the ‘what iffs’ because they may never happen.

MS is notoriously difficult to diagnose, as there are lots of other things that mimic it, and even if it does turn out to be MS, you will cope, you will learn to adapt, and it does get easier.

Although we all have MS, we can all experience different symptoms of varying degrees, but this forum has lots and lots of lovely friendly people on, all willing to listen if you need a rant, or offer advice where they can.

My first symptom (back in the 80’s) was numb patches on my one leg, and a feeling like I was walking in mud or treacle, and although I now use a power chair, my deterioration has been a slow gradual one, but I still have a good worthwhile life.

Hang in there Callum, and please ask any questions you have, I am sure someone will have an answer, take care.

Pam x

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Hi & welcome Callum

I was diagnosed about 2.5 years ago at the age of 42. I’d had a few stumbles and then a fall so went to see an Osteopath and she set the wheels in motion sending my GP a letter, the resulting MRI triggered diagnosis. They then said PPMS but I’m not sure now if they had the full picture - I’d been seeing the gastroenterology dept for about 2 years prior to this, and whilst it looks a bit like Crohns, the samples/tests never supported that. I have been told not MS the cause bowel frequency/urgency by at least 2 doctors from different departments BUT twice steroids have made all my problems go away.

So after a lot of messing about (off-license meds/referrals to London/stemcell trial that went belly up for me, my cells just didn’t grow but I hit the hardest qualification of having active lesions). I am now on a DMD but it was only my selection of Tecfidera that made my local consultant agree to try it.

The only place I can walk unaided is the corridor thru bungalow we found, when I say unaided, I still bump the walls but it really shows it’s more about balance for me not just muscle weakness, I use a stick indoors or for short walks when I’m familiar with area but crutches or walker if I have to walk more than a little way - even that isn’t fail safe so I have a chair if needed too. I still have good and bad days too and have even managed to fall just taking a single step (in living room when I stood up to greet my husband!) but on a good day I can do quite well (ironically, hospitals are great for vinyl/smooth corridors). My last fall was 2 days ago, I lost balance trying to get my keys out of my bag.

OK, my profile pic is old but I was still teaching that 3 weeks before I was diagnosed, the warm up was the difficult bit as I didn’t want to trip up in front of my girls so I’d have to instruct them verbally whilst doing my squats

I know we’re all so different but I’m pretty confident I had MS for at least 12 years before I was diagnosed but possibly for up to 20 years when you consider the weird bits like the numb toe, kicking off my right flip-flop etc. They were just weird things that I passed off as annoyances. I still became a fitness instructor with 2 qualifications when I was 38/39.

Sorry to ramble, yes we’re all different and there’s no map or guarantees but you might surprise yourself and there are so many advances going on now so at least there’s a bit more hope for all of us. I’m doubtful I’ll see a cure in my lifetime and I’m glad I found an exercise I enjoyed enough to kick my 35 year old backside off the sofa, 'm not sure where I’d be if I hadn’t done that, still walking? Maybe not I have still surprised the physios with my core strength.

I’m now 45 have to use a FES (electric shocks) to remind my right hamstring it has a purpose but I’m still not giving up, despite the bruises You’re still so young and there are absolute no certainties for any of us, so try to stay positive. It takes time to accept this diagnosis too, just take your time as there’s so much info out there but look after number one, you really need to but try not to assume the worst. I cried daily for several weeks after diagnosis, it became less frequent but I still have a real meltdown every month or two. Overall I’d have to say I’m happy - MS causes daily pain, panic, irritation etc. etc. etc. but I’m still here and life still gives me amazing husband, friends, family, love, amusement etc. etc. etc. DO NOT GIVE UP YET!!!

Sonia x