PPMS chart of problems

Regarding PPMS, I know there’s no real prognosis, but has anyone compiled a chart of all our minor and major problems?

I was dx in Jan 07 and nothing appeared till about Feb 11. My minor ailments are slowly getting worse and we all want to know what the future holds.

Only been on this forum a couple of weeks and came to realise that I’m one of the lucky ones so far. During this time I’ve noticed a lot of you out there are in pain and can’t walk. I just want to know a sort of timescale of events leading up to chronic pain and or disability.

Goodnight, John.

Hi John This disease is different for each individual, therefore you will find that each person will chart a different course of progression. I have had it for about six years (only dx’d in Dec 2011) and my legs have got progressively worse so that now I use a stick and am very slow walking everywhere and struggle quite a lot. My bladder problems are awful too so that now I self-catheterise. These are my two worse symptoms. Others include pins and needles, spasticity, pain, weakness in arms, jerky legs and fatigue - to name but a few. Other posters who will reply and have totally different symptoms and their progression will be totally different. Hth, Teresa xx

Don’t know why I posted anon, must have pressed the button. Teresa xx

I started with pins and needles in my fingers an lips back in 1987, Optical Nuritis in 1989. Had problems walking then when I got tired, rested and was ok.

I had my daughter in 2003 and 6 months later could hardly walk. This did improve over time, but I did see my GP who of course didn’t listen to my symptoms!! Was referred to a Muscio-skeletal clinic for Physio and inner soles in my shoes!! It was a different Physio who picked up on my problems and referred me to a Nureologist.

in 2007 I was diagnosed with MS. Since then I need a crutch for support, use an FES for walking and now have a wheelchair in the back of the car for when I get really tired. I take LDN which has helped alot for the pain and spasms, but not slowed progression down.

So I feel I have gone down hill quite rapidly in those few years. But others on here will have a different story to tell. No one of us is the same.

There is still life in us MS’ers even though we can’t do what we used to do!

C x

Hi John, Welcome to the board

I was dx in April 08 and was still walking ok then, big problem was fatigue. It seems to me that much of the mobility problems sort of creep up on you. Two years ago I could still walk up the road to the shops. Not sure when it stopped. Wasn’t overnight. Just got harder and harder and then realised I only ever went out on mobility scooter.

I’ve been very lucky regarding pain. I hardly ever got any at all, but recently my legs have been hurting, esp towards evening, and sometimes the pain is ‘difficult’… not unbearable but I’m very aware of it.

I think a timescale that fits everyone is impossible. It just varies so much person to person and varies by the day for each of us… but I do think that for the majority of people, PPMS creeps along slowly. Not for everyone of course.

You could have PPMS for 30 years and still be walking and not experiencing any pain. There’s just no way of knowing.

Nice to see you on here,

Pat x

None of us have a crystal ball BUT we muddle through, don’t give in to it. There’s no time scale, do as much exercise as you can, eat well and hey we’ll be chatting here in 20 years time- scary!!Be all you can be, do all you can, seize the day, good luck and take care, we are the gang. M

Hi John

Welcome to our “gang” I am sure you will find the forum useful.

I was dx when I was 29, which was many moons ago , and went from

sticks to crutches, self propel wheelchair and on to powerchair some

15 odd years ago, but none of this happened overnight, it was a slow

decline over many years, but life has still been good. Make adjustments

when necessary and don’t be too stubborn, ask for help when you need it.

Everyone’s ms is different, I can only relate to my journey, but, honestly,

life can still be fulfilling even with ms, take care.

Pam x

Thanks for all the replys guys.

I started with optic nuritis in 06 and 15 months later I was dx.

Nothing happened till Feb 10 when I developed a limp after 500 yds,now I’ve got a permanent limp and use a FES once a week for walks over 200 yds.I get cramps in left foot small toes and above left ankle. I get light headed, have a slight loss of ballance, trip a lot, both legs are weaker and can’t do much with my left fingers.

I read a post recently about someone asking about ‘retardedness’ and another felt offended because her son had learning difficulties. I feel a bit mentally slow now at time and my concentration isn’t what it used to be.

Most mornings I stretch when awake and sometimes the fingers of my left hand cramp in and out and my left leg doesn’t belong to me.

John.

Hi I was dx christmas 2010 what a present!!! I have had optic nuritis since I was 19 . I find concentration a real problem at work and find background noise a real problem and like you I feel mentally slower, I have to recheck my calculations and things like times tables are lost at times. This is very frustrating but something we will have to come to terms with I think.

I get the lovely cramps in my right foot and toes that can smart abit thats for sure , I find that if my wife rubs my foot and toes this seems to help relax my foot and the cramps .

Try and stay positive

mark

Hi John,

Welcome to the forum. As several people have said, everyone’s symptoms are different, and everyone’s rate of progression is different, so don’t be disheartened by anything you read.

I was diagnosed in late 2008 after three-year period of uncertainty about my limp. Since then I’ve used a walking stick whenever I’m not at home, because my walking has got weaker and weaker and more exhausting, and my balance is very poor. The deterioration is very slow to progress. I’ve been using a wheelchair for any outings involve walking more than a few dozen yards. Other symptoms I have are fatigue (not often overwhelming), concentration difficulties, very occasional cramps in my ‘bad’ leg, and a sense that my legs are not part of me, which is weird, as I sometimes fleetingly think ‘What’s that disconnected shoe doing there wiggling around on its own??’ before realising it’s me. My arms are a bit weak and my right arm is very clumsy so I have to be very careful when I reach out for things, not to knock them over. I’m terribly fumbly with small objects like loose change and keys.

Despite all this, life is sweet, I can still do all my hobbies, I’m still working, I’m not down-hearted about my symptoms, and I have a great support network of friends. At worst, I would say that being unable to walk very much is simply deeply tedious.

Take care, best wishes,

Chris

Hi, as you see, there is a wide variation in what happened to folk and when.

The jury is still out on whether or not I have PPMS. I reckon I do.

14 yrs now I`ve been having tests.

But from 2003-2010, I did have a 95% diagnoses of MS. Then some little idiot of a neuro decided I had something else. he changed his mind soon after and so the ??? have returned.

So if you sort of reckon I do have PPMS, here`s a brief run down of my journey.

1998…heavy left leg and drop foot

1999.MRI/LP/EMG/ blood tests…all normal

2000…retired on ill health. using wheelie part time.

2004…became full time wheelie, as mobility shot

on meds for spasms, neuropathic pain. bladder and bowel.

I struggle day to day, but have 4 carers and I still wanna grab life by the horns and live it!!!

luv Pollx

Hi John

To add another one with other symptoms, I have had numbness in my legs and sometimes tiredness so about 10 years, which was undiagnosed. Two years ago I developd a bit of a limp when I walked more than about 500 yards which took me back to my doctor. He sent me to the Neuro. However, I have also had a couple of bouts of optical neuritis. For a year my walking symptoms got worse until I was using a stick whenever I went out. I was reluctant to do much excercise as back problems were at first suspected. However, over the last two years I have had 3 MRI’s and finally a lumbar puncture in March this year. In June I eventually got told it was definately PPMS. The good news that came out of this is that I have had physio visits and have been encouraged to retake up swimming. This has helped a lot and currently am no longer using my stick for short journeys, only if I am going to be walking quite a way. If you are offered any physio, free excercise etc I would certainly take it up. I think I am lucky that my progression seems to be slow and the physio is helping the symptoms. I do get leg cramps quite a bit so make sure I go to a warm pool! My Neuro told me that new symptoms can take anything from a few weeks to 15 years to appear.