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All Advice Very Welcome!

Afternoon

This is my first posting on the PPMS section of the site - I met with my neuro on Monday and the DX of late onset PPMS was confirmed. Have received a letter in this morning’s post re-stating everything. I left a couple of posts on the ‘newly DX’ section earlier in the week but wanted to touch base with ‘people in the same boat’ here. So it’s been less than a week since I was told what I’ve got and the last few days have been a bit of a blur. I haven’t really accepted yet that I’ve got this condition - although I know I have - and I’m not sure how things are going to change.

My walking is already bad and it has been since about May this year. Some sessions (x3) of IV Methylprednisolone are being arranged and I’m already on Baclofen, with limited results. I’ve been having physio once a week for the past 4-5 weeks. At the end of the day I’m grateful to have had a confirmed DX within a few months of symptoms showing but it scares me to think about getting worse than I am. I’m a bloke three weeks short of 47 and I want to carry on with an active life - family and work - for as long as I can. Any advice anyone can give me is appreciated.

Thanks

CW

Sorry can’t really offer any advice, only to give your self time to get your head round it all, believe me it can take quite awhile. Take care.

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Hi there,

I just wanted to say welcome, I’m Polly, I’m 38, dx in the summer. Been ill for a few years, and fairly physically affected, wheelchair when outside etc, poor mobility inside etc. everyone is different and has different requirements, keep talking (should use my own advise lol) to both work and family that will help others help you.

use your GP and MS nurse or OT/physio team as much as you need, ask for as much help from them as you can too.

Anything else always give yourself space and time to adjust, we have a lot to deal with

Polly xxx

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Hi CW and welcome to the gang! You couldn’t have found a better place for support, advice and friendship.

Takes ages to get your head round it so don’t push it… one day at a time.

Remember that progression can slow down for a while or stop completely… so there’s no point in thinking what it might be like next year or 5 years down the line.

Also remember that symptoms can still come and go with PPMS so when a new symptom comes along it doesn’t mean you’ve got it for life.

Many of us on this board have had PPMS for years… I was dx over 6 years ago but we have one user who was dx 40 years ago (and who still lives independently and can still walk) so don’t let yourself get sucked into making up horror stories about your future. There is simply no way of knowing.

You do actually get used to living with it and get used to living with disability. I know that sounds hard to believe so you’re going to have to trust me.

Come on here and ask anything. Between us we have more knowledge of progressive MS than any neuro out there.

Best advice? One day at a time! Just deal with how you’re feeling today… AND make use of Occupational Therapy (they can come to your house and can get grab bars and stuff to make life easier. The got my bath taken out and a level-access shower put in… GP can refer). Think about ways to make your life easier and then work on getting it done.

Look forward to getting to know you better,

Pat xx

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Thanks for that. I believe you when you say it’s going to take time.

Cheers

Hiya Polly

Thanks for the welcome. I’ll be seeing my GP and physio next week and believe me, I’ll take whatever support I can get. I’ve never been ill before this and once you’re affected it really changes your outlook doesn’t it? Things that have always seemed important to me now pale into insignificance as I struggle to get through the day.

I was warned something might be seriously wrong in July this year when I went to a physio for what I thought was a bad back. She was really worried about me and referred me to an orthopaedic consultant through my employer’s health care scheme. From there, I had a spinal MRI and was passed over to a neuro for further scans and tests including a Lumbar Puncture. So for me it’s all happened quickly and I’ve got my DX - not what I wanted to hear but to be honest I wasn’t shocked. My walking is so bad some days it’s a real struggle to get about - at least I can still drive and I’ll be telling the DVLA on Monday.

Very best wishes, take care of yourself.

x

Hi Pat

I appreciate the warm welcome, thank you. The ‘one day at a time’ message seems sensible to me as I find my condition varies from one day to the next. Although I’ve only just had my DX, I’ve been living with this for 4 to 5 months and know I can be better in the morning, then bad later - or vice versa. It’s been really difficult to plan too far ahead as I’ve no idea how shattered I’m going to be, or how stiff my legs will feel.

I’m one of those people who doesn’t like to be fussed over too much but I know that’s going to have to change - I’ll be open to support going forward. I’ve accepted a disabled car park space at work which even a few weeks ago, I would have resisted - that’s how quickly my walking and energy levels have declined.

Anyway, I wish you well and am sure we’ll ‘speak’ again soon. Take care.

x

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Hello CW,

Yes the one day at a time method is the best way forward. Rest! It may well become a crucial part of your routine. With rest however comes guilt. “Shouldn’t I be doing something” guilt. Don’t give in to it. It’s very good to keep talking to those around you as they will need to understand how the future is shaping up. If you can keep driving you can help maintain a good level of independence. My wife has just become “THE” driver now but I’ve had MS for over twenty five years so hopefully you have plenty of time. I am still quite positive but I make sure that others understand that I do have extra needs.

Best wishes, Steve.

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Hello and Welcome CW

I’m about six months ahead of you.

Strange stuff began to happen to me in the summer of last year but I didn’t do anything about it until November soon after I stepped down from my position as company director. Initially dx’d with RRMS in January but reclassified in June with PPMS.

​As others have already said, take your time, allow yourself the chance to make adjustments and prepare for the weirdest rollercoaster ride of all time. When you’re ready find out where your nearest therapy centre is, I’ve found mine really helpful and the bunch of guys I have group physio with are in the same boat, a massive help on its own. My local centre is also assisting me in obtaining an FES device for my foot drop.

I also met with the local branch of the MS Society and the information they were able to give me was overwhelming, for me and my wife. The one thing I most appreciative of was the advice of activating my PIP claim, eight months down the line and I received my award today.

Ask your MS nurse (assuming you have one) if they are running a “Getting to grips with MS” seminar it would be worthwhile attending as again I found this helpful and informative.

There’ll be loads more and as I remember things I’ll be back, but in the meantime good luck with your “new” life.

Best wishes

Paul

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Cheers Steve, these are wise words. I’m working full time and do find myself tiring as the week progresses so extra rest will be a necessity. I’m changing my car for an auto in a couple of weeks to make life a little easier. Am taking next week as holiday to spend with the kids as it’s half term - much better than being in the office and there’ll be some time for snoozes.

All the best

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Morning Paul

Nice to meet you, thanks for the advice. There are similarities between your ‘strange stuff’ and mine as if I’m honest I’d noticed little difficulties before this year - nothing major, just tiredness and occasional trips - but I’d done nothing about it either. My wife and kids had noticed and were telling me to get checked out but I thought nothing of it. I really thought I was unfit - following a big reorganisation at work I’d been skipping the gym and was sat at my desk, or in the car, most of the day.

How wrong I was because I never imagined MS. By April/May of this year the difficulties with walking were much worse and I realised I was even worse when I got hot - went to the steam room at the gym for twenty minutes and fell over. I could only get back on my feet when I’d cooled off. Since then, tests and scans have proved what I’ve got. So it’s a scary time and I’m having to re-adjust by doing less and not thinking too far ahead.

I haven’t seen an MS nurse yet but a referral has been organised by my neuro and I’m sure this will be a great resource. I’ll look into the seminars idea as I’ll consider any suggestions I can get. I’m not sure what a PIP claim is but it seems you’ve had to wait a while to get it?

You say you stepped down from your Director’s position and I’m presuming that was because of MS - are you able to work today?

All the best Paul, keep in touch.

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Hi CW,

Sorry to hear your diagnosis. When I was diagnosed I had gone to my doctor because I had started limping after I had been walking for a while. I never expected it be told it was MS and as I was 49 I was told it is probably PPMS, that was just over a year ago. I have just had an MRI and will get the results in a few weeks when they will then confirm the type of MS. I haven’t been on any medication and still working full time but I do get tired. It is a lot to get your head round and I do have times when I feel panic about the future. I try to remain positive and continue to do things as much as I can although I can’t walk as much as I use to. When I go out I think about how far I need to go and try to find somewhere to sit for a while and have a break.

It is very easy in our busy lives to put off doing things we really want to do, I have decided to put more effort into doing things I really want and travel while I am reasonably mobile which I hope will be for many years to come but who knows.

Take care.

Jackie

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Hi CW

i think you’ve already had loads of really good advice, so I’m just saying hello, really. Hello!

I would add two things:

you may well feel like crying a lot and you should allow yourself to do so. My gp pointed out that the process of accepting your condition is akin to grief after the loss of a loved one, except now you will be grieving for the loss of your former self. As others have said, you will reach a point of acceptance, but there’ll be denial, guilt, tears and anger on the way.

Secondly, your physio is so important, keep doing the exercises, even though you may start to think what’s the point. The point is, there is nothing wrong with your legs and you must try to keep as much muscle tone as you can. Otherwise things will be even harder.

all the very best

Kev

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Hi CW,

Everyone has given you great advice…I can only reiterate, take one day at a time, enjoy the things you are able to do whilst you have the energy to do them and talk to your family as much as possible.

Like most of us you’ll doubtless find it hard to learn to rest as much as you need too but believe me it’s vital and once you can accept that you need it and are not being lazy, you will see that you benefit from it.

A huge welcome to our little group, for me it’s been a life saver to know I’m not the only one suffering all these weird things. I do hope you get as much benefit as most of us do from being part of our group. There are loads of lovely kind and supportive folk on here.

Good luck and take care of yourself,

Nina x

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Hi and welcome

I’m 44 and was initially diagnosed about 18 months ago and it was a shock to be honest. I was very active (part-time fitness instructor teaching classes twice a week) and self-employed as a contractor. I went to an osteopath when I had a fall and it all started to unravel -spinal unit- MRI- walking stick- neuro- steroids- tears- bruises- physio- falls- blue badge- tears- MS forum-neuro- MS nurse- drugs- more drugs- PIP application- PIP appeal etc. etc. etc. The tears are only occasional now tho

I’m still a contractor but now I have to work the same contracts as hubby as he drives and I surrendered my licence. I sleep on the journey to and from work and I don’t go to the gym now

I’ve not had a lot of luck with drugs but I just don’t think they expect you to be alert with MS! I’m doing my best to stay with-it walking and working for as long as possible.

Sonia x

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Hi Kev

Thanks for checking in to say Hello. I’ve had some great advice since my post yesterday and I’m grateful for all of it - there are some really nice people on here. I’m still very raw after my DX last Monday and I have an awful lot to learn about how I’m going to cope. Your point about grieving is so true because I’m full of grief for losing the bloke I was only last year - goodness knows where I’ll be next year or the year after that. If there’s one thing I’m glad about, it’s that I know what’s wrong with me and treatment is planned - but I’ve no idea whether IV steroids will work and my neuro wasn’t that positive. I guess I’m also glad that my symptoms weren’t visible earlier in life - say 5/10 years ago when the kids were really little. I’m nearly 47 now so at least I’ve been able to play footie, go to their parties and have some seaside holidays. You’re right about physio and I’ll stick with this to see how much it helps.

Very best to you too and I’m sure I’ll see you on here again.

Cheers

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Hi Nina

Many thanks for the welcome and the advice. You’re right that there are some really nice people on here and I’ve received plenty of good ideas since yesterday. The point about rest has been mentioned quite a few times and I’m sure that’s going to be near the top of my list. I don’t always feel tired every day but as the week goes on, I get shattered and will need to find ways of coping with this. I’ve found that as my walking has deteriorated more energy goes into mobility, so it’s a virtuous circle.

You take care too and see you on here again.

x

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Hi CW

Welcome to our “gang” lots of lovely people here with a huge amount of advice, also a shoulder when needed.

My advice is take one day at a time, listen to your body and rest when needed, take all the help offered, and don’t beat yourself up with frustration, remember you are going through a grieving process, and it takes time.

You will become accustomed to how your ms affects you, as it is different in everyone, but hang in there, it will get easier, and there is still a worthwhile life with ms.

Take care and be kind to yourself.

Pam x

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Hi Sonia

Nice to hear from you, thanks for the welcome. My MS journey started in July although I’d been worried about my walking a while before then. The tests and MRI scans went on during August/September and the DX was last week - I was told by my neuro and received his confirmation letter yesterday. I can understand the frustrations you must have had along the way and feel sure it must still be difficult now. I bought myself a walking stick from Argos a few weeks ago and it’s kept in the boot of my car for emergencies. I’ve not used it properly yet and I really don’t want to but I’m glad it’s there just in case. I understand what you’re saying about walking/working for as long as possible and am with you all the way - I’m exactly the same.

Very best of luck to you Sonia, see you on here again.

x

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Hi Pam

I’m very pleased to be welcomed to the gang, thank you. You’re right, there are some really nice people on here and I’m grateful for all the messages I’ve received since yesterday. I hadn’t thought about grieving until it was mentioned earlier today but it’s absolutely right. I am grieving for the loss of who I was before 2014 and who I’m not going to be in future. I’ve always been quite hard on myself to get things done and be a success but now understand that will have to change. It’s difficult isn’t it, when you’ve been independent and in charge of your life - I’m going to have to rely on others for their support.

So good advice Pam. All the best to you and see you on here again.

x

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