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PPMS

Hi all I don’t know if this is common but up till I was told I had PPSM I had more visits to the hospital I went to a MS weekly physio and relaxation class and Add help with speech therapy . But once we were told I had PPMS after the last MRI scan I have had no contact with the hospital except when ( 3 times) I contacted the MS nurse with problems I had and was told that they were related to the MS and attending a weekly meeting with a doctor for depression . We know just deal with my bad days with balance and speech and pane in my neck and back when they appear , is this normal I feel I have been cast aside to get on with it. Steve

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Hi Steve

Welcome to the forum, nice friendly little bunch here. Unfortunately as there are no “quick fixes” for ppms I suppose yes you can feel like you are just left to get on with it, but you will get to understand your own ms, and it does get easier.

Symptoms that you have such as pain etc, your gp or ms nurse can prescribe medication that can help, maybe worth having a chat with them.

Look forward to seeing you on the forum.

Pam x

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Hi Steve and welcome. Yes sounds pretty normal for PPMS unfortunately…but you should ask MS nurse to refer you back to relaxation and physio classes. Sometimes we have to push a bit to get what we need. Glad you found us. This is a great little gang and we all help to support each other. Take care and get onto that nurse. Simply refuse to be cast aside! Pat xx :slight_smile:

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Hi and welcome

I’ve been told likely PPMS and was packed off for a year, it does seem that it’s the norm.

Having said that, I’m doing a second course of steroids as after thinking about it a lot,I think I’m mild RRMS and SPMS rather than PPMS, he just is obviously out on that tho.

Sonia x

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Thank you all I some times feel I have just been left to get on with it, But i do understand there loads of people out there worse off than me. Having been a builder for 40 years and played rugby in my younger years I was always active but now every thing is a effort now I even have trouble opening a jar, my left side is very weak / very bad balance problems fall a lot but at least I bounce. Theresa my special other half is my shining star she is such a wonderful support and always manages to bring me up when I feel down or I am having a bad few days. Until I was taken ill I did not think twice about how long term illness and disability effects the family around you and so many don’t . Well thank you all again and I will now be a regular visitor to this forum Steve Maslen

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Hi Steve and welcome, we are just left to get on with it BUT here you’ll get practical help and a listening ear or twoWe are the cool groupM

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Hello Steve, the transition from an active life to something more physically restricting can trigger off a whole myriad of emotions. It’s good that you have so much support and are able to acknowledge it. As previously mentioned, you might need to be insistent with the MS nurse, pointing out the benefits of regular physio and relaxation sessions. My left side is quite badly affected too and jars, toothpaste tubes or anything requiring a grip with two hands are now the devil’s own devices. Wine bottles are ok because I can grip them between my knees! Best wshes, Steve.

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Hi Steve, Welcome to our little group! We do tend to be left to our own devices but if you’ve got a good MS nurse they will help you to get all the help you need…but you do have to ask! I’m so lucky mine is an absolute star :slight_smile: Best wishes, Nina

Mine is like a ‘chocolate fire guard’ resilience and inner strength! Best of all a sense of humour M

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Hi Steve,

I am newly diagosed myself and I feel your pain - you are kind of left. However, everyone here is awesome, any issues and this little community is there for you. It is incredible!

Take care of yourself,

K

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Hello Steve -

I’ve got a case of the nasty PPMS as well. You really do have to advocate as much as you can for yourself…be irksome, nettlesome, pesky, etc. That’s been my experience anyway. We have the most perplexing slice of this perplexing pie it seems.

Best of luck.

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Hi Steve and welcome to the board you can bring your problems here but in the main I think we all know the answers but come here for some moral support. There is not a lot to be done but a trouble shared is a trouble that someone else knows about.It is still there but you now have a dozen people telling you what you already know. Laughter is the best medicine smile and the whole world smiles with you. MS is a bit like that if you let it get to you it will make stuff worseand you will cry alone but laugh at it and it backs off a little. SMILE it confuses the enemyand those around you.

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Thank you your right but I do some times let it get to me.3-00 this morning I had burning feet and left leg was having spasms woke Theresa up again but she is always able to make us both laugh even though she as to get up for work. To-day I have slept a lot but feel a bit better

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I had a fall the weekend and today I never got out of bed till 1;00 it gets me a few days after the event my wife made me smile when dressing me for the life of me I cant rember why bur we laughed like drains it is harder for her she is the one who does everything for me I cant get dressed etc without her help but she keeps smiling and makes me laugh. she is my smiling Angel

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Welcome Steven, hi to everyone else,

I have learnt more from people on here than I have through the professionals. They have helped keep my spirits up and parented me during my darkest hours.

Pauline

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How lovely to read that you both have wives that can make you smile! Long may it continue, good luck to you both. Nina x

Has any one used Amantadine used to help against fatigue as I feel I am sleeping my life away ( sleep most afternoons between 3-5 ) so try to do everything in the morning. If so do I see GP or MS nurse Be good to know many thanks

Steven

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Hi Steve and welcome to the forum. Sorry, I don’t know anything about Amantadine but just wanted to welcome you. I was dx a year ago and the people here have helped me cope so well. Fortunately my ms nurse is fantastic so I’ve not felt abandoned but it’s reassuring having everyone here who actually experience what you’re going through rather than asking someone who has read a book, though to be fair the good medics see so many people that it probably feels like second nature to cope with our issues.

Have you got an Occupational Therapist? They’re really good at finding solutions to those everyday problems and have so many gadgets and resources to help keep you safe at home. You can self refer if you don’t have one, just contact adult services in your local council.

You’re not on your own though, there’s usually someone who has experience or suggestions with most issues. Take care.

Cath xx

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Thank you Cath just trying to find the best ways to cope with every thing I will check with the ms nurse .

Steve

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Hi Steve,

I’ve tried Amantadine and Modafinol, both stopped me sleeping, however, I’m told that effect is not common. Of the two Modafinol had the most noticable effect on my fatigue. Both seem to used by a lot of people to good effect. Although they didn’t suit me I would still say it is worth you giving either or both a try…imagine life without fatigue…how wonderful!

Welcome back to the board.

Nina x

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