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just got diagnosed with ppms

oh well took a long time for diagnoses but got ppms still trying to work out what the future holds and what it means to me

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Sorry Hellbenders I have SPMS so can’t really advise but I’m sure someone will. The reason for my response is your post has just appeared for me and I noticed it was posted yesterday afternoon at 3.02. Maybe other people haven’t seen it yet or it has just appeared for them too.

Odd goings on again.

Jan

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Hi Hellbenders

As they often say on here, welcome to the club

I assume that you’re newly diagnosed. If so I to jumped straight in as I couldn’t really hide my dropped foot nor the difficultly in using my left arm to cut food on a plate. I also visited my local MS therapy centre who have since been a great help in getting some mobility back in my foot, with a little physio and an FES device to trial.

There’s also a local branches of this society and my local group organise meets, normally at a resturant or pub just for a catch up and a chat. On my first visit I came away overwhelmed with the amount of information fellow MSers gave me.

Good luck and take time to come to terms, and perhaps always remember you’ve been wired up this way, no ones to blame for it and there’s nothing you could’ve done to prevent it happening.

Best wishes

Paul

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Can I call you HB12 I cant be asked to type I am just going for a snooze I almost put smooze

Wellcome to the club ZZZZZ I cant keep my eyes open speak later

X Don

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Hi

Welcome to our “gang” lots of lovely friendly people here, always willing to listen and offer advice when they can.

We all appreciate this is a club that you would not have chosen, but I just want to say there is life after a DX of ppms, a worthwhile life, perhaps different to what you planned, but still enjoyable.

Have you been put in touch with an ms nurse? If not, ask your go or neuro to refer you, they are a great source of information and help. Also asked to be referred to an OT who will visit you at home, and make suggestions that can help you at home.

If you do have symptoms that you are struggling with, your gp can give you medication that can help, you do not have to wait until your next neuro appointment.

I know its a lot to take in, so give yourself time and be kind to yourself, it will get easier.

Look forward to seeing you on the forum.

Pam x

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Hi Hillbender

I have had PPMS for 10 years, no body can tell you what the future holds as we are all different, but listen to your body , you will be the expert on your own condition, however as I have recently found doesn’t stop others telling you different.

I can still walk for short paces as long as i listen to my own body, sorry for the rant but hubby is driving me nuts because he thinks he knows best

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Hi Hellbender, welcome to tha gang…

You will find this group very supportive… knowledgable… and really helps in so many ways, perhaps importantly to know you are not alone.

Of course it’s impossible to say what the future holds… that’s true of life for everyone on the planet but having any chronic conditions opens our eyes to it.

What I can say is that for most people symptoms still come and go… so a symptom now might not hang around for ever. There are still good days and bad days… and that in general progression is relatively slow… in other words it’s very unlikely that you would go from full mobility to no mobility overnight & some people never lose their mobility… so worrying about it is a bit of a waste of time and energy. Cross bridges as you come to them.

Understanding your MS and learning to listen to your body, as Trish said, is very important. You will become the expert on your own PPMS & understand it much more than the neuro’s etc.

When you’re in the mood tell us more about yourself… & don’t rush to get your head around it all at once. It takes time.

One day at a time. Repeat that to yourself daily!!! It really helps.

Looking forward to seeing you on here again.

Pat xx

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Hi and welcome, sorry to hear your news, I was a bit of a wreck after my diagnosis so I can well imagine how you’re feelng.

Pat’s advice (as always) is a great start, and remember, we’re around if you need support or to let offsome steam.

Sonia x

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If you look under “Support” at the top of the page, in the side bar is an entry “Publications and library”. The MS Society produce a long list of booklets on different aspects of MS - you can download some of them to your computer, or you can order print copies to be sent to you. When I was dx, we walked past a rack of MS Society publications on the way out, so we stopped and picked a few up. Some were useful then, others were more “for future reference” but I recommend having a browse and at least see what’s available.

As Pam said, you should be put in touch with an MS nurse and she will be able to refer you to other support depending on your particular symptoms and the problems caused by your MS. They can refer you to neuro physios, continence services, occupational therapists, wheelchair services etc etc.

Give yourself time and space to get your head round the diagnosis. Everything changes and nothing changes: you’ve got a label for all those symptoms and you’ve got a less certain future than you thought you had, but you are still the same person you were yesterday. You need to allow yourself to grieve for the life you thought you had and that takes time. I was dx 6 months ago and I still have up days and down days about it - more up than down on the whole but it’s taken a while to get here. A couple of months after I was diagnosed I had a few very down days - I rang in sick to work and more or less hibernated for a few days, feeling very sorry for myself and crying a lot. That was the worst but I’m not sure I’ve reached full acceptance of my diagnosis yet.

And remember, we are always here - whenever you need help and support, just ask.

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Back and awake this time. PPMS is not the end of the world, for me it was the start. I was diagnosed over twenty years ago and whilst it has not been easy it’s been interesting to say the least. This board is here for you to laugh or to cry to help And support everyone here has there own unique way of coping no one is right or wrong just coping. Welcome, if you want us we are here just ask nothing is to silly and quite a lot of stuff we won’t know the answers to but we can maybe help put you in the direction of someone who does.

Don. Aka hoppity.

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Hi Hellbender and welcome to the group. As the others have said we try to help and support each other, it’s not always an easy road but knowing you’re not on your own and that here you can discuss any aspect of the condition or symptoms without anyone judging you is a big relief. No matter what, someone here will either have experience or suggestions for you and if it’s personal or you’re shy you can ask anonymously, we do try to answer every post but new member’s posts are held back for a short time to prevent spam, don’t get disheartened, it’s not for long.

My ms nurse recently offered a course for newly diagnosed people and I’d definitely recommend it if you’re offered one too. For now make sure you rest, be kind to yourself but definitely get referred to the services mentioned, they really are a huge help. And we’re always here too, use us. Take care

Cath xx

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Hi Hellbender,

Welcome to our lovely little group, I have found it a lifesaver to be able to ‘talk’ to people who really really do understand.

Its so very hard coming to terms with a new dx. Everyone has given you such good advise, my best advise is take pleasure from the little things in your day, try not to use up all your time worrying about, tomorrow, next week or next year because it won’t change things it just steals the now from you.

I hope you come back on the forum, especially if you need support. Also to tell us more about yourself, if you feel you’d like to.

thinking of you,

Nina x

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Hi as the others have said welcome to the club, the guys here are great very supportive

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Hi HB

Welcome to our group. Not really sure what I have was dx PPMS and then consultant reviewed it to SPMS. Whatever it is I have found this forum invaluable.

I was dx 6 years ago but it didn’t really change much until about 18 months ago when my mobility started getting worse. I then started getting depressed and realised I needed extra support because although my family were brilliant, they didn’t get it.

Everybody on here has been so supportive at a time when I really needed it. It as so nice to speak to someone who really knows what you are going through.

As it has been said before every bodies ms is different and it takes time to come to terms with. I still get “what have I done to deserve this” moments but life goes on and you just cross bridges as and when.

We are here for you if you need any help.

Take care,

Mags xx

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Hi Hellbender12, and welcome. We’re a broad-minded and accepting bunch here, hope we can be of help. And is it just me or is anyone else having trouble doing hard-returns? (Don’t like posting in massive paragraph form…)

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Hi Hellbender( what have you done or wish to do to use Hellbender!! ) Sorry to hear of your diagnosis, The ppms family are very supportive

hope we can be with you on your journey of ups and downs and all arounds. I’m not religious, but I say to myself " god give me the serenity to accept the things I cannot change , The courage to change the things I can and the wisdom to know the difference" I have gone through so many emotions since my diagnosis in December,words of wisdom ride the waves.“I should practise what I preach”.

Pauline x

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Hello Hellbender -

I was Dx with PPMS in April of 2012. I’m still walking and workiing full time. There is just no telling what is going to happen. The fear and hysteria last about 24 hours for me because ultimately the fear and hysteria aren’t going to change or cure the condition. So I read quite a bit. I’ve made modifications to my diet and how I exercise. I make sure I get sleep and stay hydrated. There are tools you can use to keep yourself as highly functioning as you can for as long as you can. You need to find what works for you and arm yourself with those things. Look into supplements that target mitochondrial function. Try to change everyday chores like laundry or dusting part or grocery shopping into part of your exercise program. I saw that somebody mentioned ‘listen to your body’…that is great advice. Now more than ever. I wish you luck.

Sean

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Belated welcome, HB!

This isn’t a club any sane person would wish to join, but now we’re here we try to make the very best of it!

Kev

ps hi to Sean too- being fairly new here myself I haven’t seen your posts.

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thank you people i hope to get myself sorted soon but i have looked around on this site and it has been very helpfull, sorry it has took me a while to reply forgot my password but sorted it now i hope mine you i seem to forget a lot anybody else do that tee hee

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Oh yes, forgetfulness is very common here, apologies not necessary. You’ll get yourself sorted out in time

Cath

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