Forum

newly diagnosed

Hello whoever you are reading this I’m John. I’m 16 years old and was diagnosed with PPMS yesterday morning. I know this is highly uncommon in people my age and the news just came as a massive shock to me as I thought, well was hoping that they could give me medication for this but they seemed quite confused about what to give me and have took it to a board meeting. Should I be as worried about this as I am? I mean its not life threatening. I hope. Is there anyone on here who can give me any advice about what is going on and what will happen in the future? Thanks.

1 Like

Hi John,

Wow 16 that’s young. Sorry but I can’t help I am 39 and was only diagnosed with MS in March I don’t know the type for definite, my Consultant thinks it’s progressive but I have to wait and see.

I would say it’s completely normal to be worried about it.

I suspect that no one will be able to tell you what’s going to happen in the future because we all seem to have different symptoms at presentation and different speeds of progression.

I have been advised not to look ahead and just concentrate on one day at a time. Easier said than done but I suspect is good advice.

I believe another good bit of advice I have been given is listen to your body and pace yourself. If there is something you really want to do make that your focus and leave other less important things to a different time or day.

Hoping you have lots of family support. Good luck with it all.

Snowqueen

1 Like

Hi John, oh you are very young to be diagnosed PPMS!

There isn’t really medication to treat PPMS as such (not yet!) but there are med’s to help with symptoms, muscle spasms, that kind of thing.

It’s impossible to tell you what the future holds as it’s different for everyone. Lots of people have PPMS for years and years and are still in good shape and have good mobility. Other people can be more seriously affected… but then progression can just suddenly stop!

For most people PPMS is slow progression. So no need to worry about big shocks… like you won’t wake up one morning and not be able to walk. It happens slowly over time so no big shocks. And some people don’t have a problem with mobility.

The great news is that in the last couple of years there has been HUGE amount of research going on worldwide. Part of that research is to look for treatments for PPMS to slow it down or stop it progressing altogether. Another part of that research is looking for a cure!!!

You might have read about stem cell research. Loads going on there which one day could cure MS and reverse the damage.

But all that of course is in the future. All of us on this board have got masses of knowledge between us so can advise you the best way to deal with your symptoms. Nothing is taboo on here John. You can tell us anything!!! If you read old posts you will see what I mean.

I’m really glad you found us. We’re not a gang you would have chosen to join (who would?) but it can help chatting to people who know what it’s like.

Have you looked at website ‘Shift MS’? It especially for young people so take a look on there too.

As Snowqueen said, try and take it one day at a time. Don’t worry about the future. Just deal with what you have to deal with today.

Take care,

Pat xx

1 Like

Hiya John welcome to the club man, I’m really sorry you’ve had to cos like Pat said it’s not through choice! I really feel for you being diagnosed, your head must be spinning with it all. I can relate to you though, I was diagnosed ppms when I was 18. It’s hard, really hard to try & get your head round it being so young. It’s not fair, it really isn’t! I’m 37 now so I’ve got a lot of ms years under my belt. It’s such early days for you but you’ll be allocated a MS nurse & they’re available to talk through the symptoms you’re experiencing & suggest different medications that although they don’t take the ms away, they definately help. Aww I really feel for you, just try & take each day as it comes. This place is a hive of information & there’s nothing that hasn’t been talked about. We all know how it feels & although it might not seem it just now, it does feel better knowing there’s people here that understand & know what your saying & feeling. Pm me anytime you want to john okay? Stick in dude. Rose x

1 Like

John, We are all here in a ‘similar boat’ - l have had PPMS for 33yrs - and now l am 67 - so its been a big part of my life.

l have always pushed myself and tried to keep moving as much as possible - doing lots of exercise to keep muscles/joints working - l still managed to ride my horse up until 2rs ago when l had to have hip/knee replacement ops - still hoping to get back to riding. l cannot walk unaided now - but l still manage to do lots - have a rollator and a super all-terrain scooter Tramper. So life is what you make it. Many folk do not get the same mobility problems.

Right now l am very interested in the trials done on Biotin. And have started taking it a month ago. There is a facebook group called Biotin for Progressive MS. lts global - many folk have joined in just a couple of weeks. This is the first time - that l know of when a trial is for something for progressive ms-

  • And don’t get put off my all you read- No two people are the same - with MS. lt is not one size fits all.
1 Like

Hi john . 16 is very Young . I’ve had various health ailments and I’m 25. I got diagnosed with arthritis age 23( had symptoms from 16ish) and was terrified . Many years along the progression of my illness has been slow and much less severe as the internet / doctors would have believe . everyone is different and that needs to be kept into perspective .

i also know a lovely chap who got diagnosed around your age and he’s had his ups and downs but he is doing relatively well now .

My advice is use trusted websites(such as Ms society ) & try and talk to people your age with Ms or even other health problems .

You will get through this x

p.s Im undiagnosed with Ms as of yet but felt compelled to reply to you

1 Like

John - There are so many people on here who have waited years to get a firm diagnosis. And they have been left in ‘limbo’.

Can l ask you what tests you had for your diagnosis. And where your went and who your neuro is.

lt appears that different neuros have their own ideas about what is and what isn’t MS. You will find out - no doubt - that there are many other illnesses that mimic MS.

Vitamin B12 deficiency is one. Google ‘Could it be B12 - an Epidemic of Misdiagnosis.’

MS - is one of those illnesses that you need to be a bit pro-active and find out as much as you can for yourself.

On here - we are always learning- and sometimes it is best to be your own expert.

Even after 33yrs - l still have hope of a cure - and l am sure it is just around the corner - and will probably be something very simple.

Hi John,

I am so sorry you’ve had this diagnosis at such a young age, my advise is try not to worry…easier said than done I know! I had my first MS symptoms at the age of 14…I am 63 now and I thought you might find it a comfort to know that I can still walk around my house…I do use a chair out of the house but in my case it’s more because of weakness than my legs not working.

Everyone is so different! From my point of view I think it would be sad at such a young age to waste your life worrying about what might be…take each day as it comes and make the most of it. Your life will be different from that of your friends but you can still live a very happy life with MS…it will take a while to come to terms with your dx but given time you will learn to cope.

Between us all on this section of the forum we have gleaned a lot of knowledge over the years…you can ask us anything and we will do our best to help. You might find people of your own age on the young people’s section of the forum although I imagine most of them will be RRMS, even so it might be nice for you to chat with young people , never the less we will always be here if you need help, advice or support. There are some very very kind and caring people on here, it was a life line for me when I joined

Thinking of you and sending you my very best wishes,

Nina x

1 Like

Hi and welcome,

so sorry to hear your diagnosis your emotions must be a bit all over the place right now hugs

Oh, and I’m not PPMS but thought I was for almost 2 years, so I still hang around here a lot

Sonia x

2 Likes

Hello John,

Welcome to our lovely forum… everyone is so friendly and you will get loads of support and good advice.

Michelle x

2 Likes

Hi John

It’s very early days for you yet and you have a lot to deal with at the moment. This is the worst time for anyone diagnosed with MS, as you struggle to come to terms with it.

MS is a very unpredictable, variable disease so unfortunately none of us can answer your questions.

Realistically, who knows what the future holds for anyone, whether they have MS or not.

However, there is hope. MS is no longer the disease it was. Huge steps have been made in the treatment of Relapsing Remitting MS (RRMS), the focus is now on developing treatments for progressive MS. They will crack it one day!

Huge advances have also been made in the treatment of the symptoms caused by MS. Stem cell therapy is being developed, it has the potential to revolutionise the lives of people with MS.

You have some difficult days ahead of you but hang on in there, it will get better!

Anne

3 Likes

How are you doing John?

Was wondering if you have good family support.

Let us know how it’s going. I’m sure you must be on a rollercoaster of emotions right now. We all go through that when first diagnosed.

Pat xx

2 Likes

Best wishes John, have you looked at the other forums? Everyday Living is very informative as is the Newly Diagnosed there is also a Young Person Forum but I guess you’ve looked at them all. I’m classed as SP but I feel as comfortable on this forum as I do on all the others.

Did you mean Neuro Team meeting when you wrote board meeting? I guess they would discuss your case and decide the best way to help your situation.

Keep smiling

Jan x

2 Likes