New diagnosis of PPMS

Hi guys

I am brand new to this forum and was only diagnosed with PPMS on Friday 14 Sept. What a shock!!!

I am 50 yrs old, work full time in the Civil Service, a dog owner & walker & a horse owner and rider, so really always quite active. I must say that I don’t go jumping around the countryside anymore on the horse & I ride for pleasure these days. I need help to get on my horse due to my left leg

I’m really not sure what lies ahead? The consultant said to keep doing what I’ve done for most of my life, nothing should change!! My left leg and my walking has been quite badly affected which is why I went to the GP’s in the first place.

I am waiting for my appointments with the MS Nurses, physio etc etc

I am still coming to terms with this and have difficulty telling people without getting upset

I have so many questions…


Hi Michele and welcome,

Not a club you want to join but you will find genuine help from others on here.

The lurgy (MS) is not a nice thing to suffer from but believe me it is not a stop sign; it’s more like traffic humps.

It lays down certain restrictions; like with your leg; and you must obey them or it will bite you back. You don’t know what those restrictions are until you try.

I celebrated my 40th birthday last week; 40 years since I was diagnosed. So it just shows you if an old codger like me can enjoy a life with MS by obeying the restrictions and altering them to suit.

Good luck darlin.


Hi Michelle

I’m with George, be all you can be and use your common sense. It may bite you every now and again BUT it won’t all of the time, it’s like a gorgilla in the room, sometimes it’s a silverback BUT not all the time and you can learn to push him into the corner with a chair (lion trainer like), I’d say and a whip but I don’t want to over excite you It’s not all bad and if you have a sense of humour you are in good company

This is theclub and welcome M


Thank you both for your very kind and supportive messages.

I think I have come to the right place as I’ve just had a very bad half hour and your messgaes have put a smile on my face…

Michelle x

I think it was the whip that did it, a cool cloth and a darkened room ? It’s just a rumour that I am always here, I’m off for a coffee, hope you have a good dayM

Hi Michelle, and a BIG welcome to the board…

It really does take some getting used to but I so agree with other George and M… it is NOT the end of the world!

Actually believe it or not, there are some positives. It does give you a different view of life… sort of appreciation of the small stuff. You won’t be at that stage yet, but it will come in time.

No way of knowing what’s ahead. Some PPMSers progress very slowly. Some reach a point where they stop progressing. Some progress quicker. But that’s kinda where the new attitude comes from.

Really there’s not a human being on this planet who knows what lies ahead… but with MS that is put into the spotlight. After a while you will live more ‘one day at a time’… and also will get to know your MS. Know what you can manage and what you can’t. Will get to know the warning signs.

Great to have you in the gang! Come on here to ask anything at all or just for a laugh… or a cry. We are all here for you.

Pat x

Hi Michelle

Welcome to “our gang”. I fully endorse what everyone has already said,

and just want to add take one day at a time, accept help when offered,

and be kind to yourself, dont beat yourself up.

Take care


Just to reiterate what Pam said. Welcome to our little ‘club’. Sorry for your dx - I know it is a big shock. I was only dx in Dec last year and am still getting to grips with it. Do not think too far ahead - take everything day-to-day and have plenty of rest when needed. Please feel free to rant and rave at us on here. We are happy to lend support. Teresa xx

Hi Michelle,

I was diagnosed in Jan 2007 after eye problems and if I surfed the net then answers would’ve been found.

I had no symptoms till Feb 2010,when I developed a limp after about 400 yards and since then things have gradually got worse. Sept 2012 - I have a permanent limp and use an electronic foot-lifter to stop me tripping because my left foot won’t lift most of the time. Both my legs are weak, I get cramps in small toes and ankle of left foot, fingers of my left hand are becoming useless, short-term memory loss ,wife says I’m grumpy (she can talk) and tire easily ( more so in warm weather) and think concentration levels are down.Apart from that I’ve no serious pains.

I’ve been assured there’s no prognosis and think no two cases are the same because I was going to start a thread asking if anyone can predict my fate,but that’s impossible. Not unless someone out there has my exact symptoms.

I attend a local MS Rehab clinic and my physio encourages me to adapt to situations, like my mobile was in my left rear trouser pocket and couldn’t get it out.Answer - don’t put it there.

I’ve only joined recently and think I’ve been lucky so far compaired to most posters on here.

I know it was a shock,but be positive.


George, am I missing something with you? Were you dx`d at birth? Dunno what to think!

luv Pollx

Hi and welcome aboard this mad old ship HMS MS!

It sure does take some getting your head round, but give yourself time. Never beat yourself up for having this monster in your life. Like with eveyone else, it gatecrashed into your life. it gets means `cos no-one want to be his friend.

Having said that, a good thing about it is knowing there are folk who understand, empathise and have patience to listen./read whatever you have to say.

We`re all here for each other.

luv POllx

Poll… I think George uses ‘birthday’ for when he was dx… not when he was born.

Did take a bit of working out!!!

Still it’s good to know he has lived with this for 40 years and still going strong!

Pat x

Na Poll

I’m 63 but last week was my 40 years since diagnosis; I’m an old git.


Hi Michelle

Welcome, this site will be of great use to you. It will offer some answers, some advice. some sympathy and encouragment but most of all it will offer you some new friends.


Good morning folks

We’ll be missing Pat for a while so I thought I’d say hihope you have a good dayM

Hi M, Hope you’ve been well today. We will all be glad to see Pat back, won’t we? Teresa xx

Thank you my darlings!!!

I missed all of you.

Very glad to be back!

Pat xxx

Hi Michelle,

Welcome to the gang. We are all a good group of people on here.

It is a mind blowing shock when the diagnosis comes. I had heard of MS, but didn’t really now much about it. I was diagnosed 5 years ago. But had had the telltale early signs since 1978. It was after the birth of my daughter that things really came ot a head. Like you I was fit and very active. But things have slowed down alot since!! My walking is crap. I use a crutch and an FES now. But I can still get out and about.

Don’t let it get you down. There is still a life with MS. It just might not be the one you had in mind for the future!!

Anytime you feel down and out and need advice. This is the place to come. There is always someone on here to cheer you up and offer great advice about anything!!

Chin up and take care

C x

Hi Michelle

I was dx a bit before you, in June this year. It’s sort of sunk in now and I have realised that I can manage my symptoms. For instance, I have a limp after about 500 yards, and am also a bit wobbly. This year I went to a flower show. I knew I wanted to be there most of the day so I made sure I walked for a while, then sat down for about half an hour, then walked again. It may seem a bit tedius in the first instance to do this, but in the end it paid off and I saw quite a bit. I am now swimming regularly and that has helped as well. Doing as much as you can without tiring yourself out to much seems to be the key. I still feel that I have a lot to do and with management of the symptoms I am going to do it.

Hello from me aswell.

I have gatecrashed your special gang as I am a RRMS., but it shows you can post anywhere on this site. I usually read what you mad lot on here get up to.

So sorry you have joined the crew of HMS MS,but there is hell of alot of help and support on here.

Take care