Forum

PPMS and how it effects you

Hi,I have had ppms now for approx 3 yrs now during that time my walking has got worse to the state where I need a elec wh chair at work,and the short distances I can walk are with a stick,I also have bladder problems.

I know everyones MS is different but was thinking what other symptoms do people get and over what time period.

thanks for sharing your PPMS experiences.

David

Hi David, I was DX late last year but have had problems a lot longer, I can walk very short distances around the house but use walls and furniture to steady myself. When shopping I borrow a mobility scooter from the store or my local scooter club.

I have problems with my bladder and bowels

I uses glasses when watching telly films or using computer and the Doctor says I need them to be legal when driving even thoough I don;t think they help I wear them anyway.

I cant stand for long periods of time and start to wobble and stumble. I can often trip over my own feet

When walking anything further than from my house to my car or going up steps when there is no hand rail I use my quadropod which my phyisio says i don’t really need I use it anyway because I feel more secure.

I am getting slightly worried as I feel my limited mobility around the house and getting to my car is getting worse

Hi David, I was dx in April 2008, so over 4 years now. Had some symptoms for up to 10 years before that but stuff that came and went and got forgotten… except fatigue which had been around for ages.

I would say my MS has slowly progressed in that time. Mobility is difficult. I get around my flat ok using furniture and walls for balance, but some days I use walking stick in flat. On ‘good’ days I can walk up small side street where I live, using walking stick. For anything longer I use mobility scooter. But it does seem to vary by the day or even by the hour.

When I was dx I had a constant buzzing, vibrating feeling in my legs. That has spread to torso and to my insides… strange feeling of vibrating inside my chest and stomach.

Hands go through periods of ‘clawing’ esp when tired, or one finger will decide to do a jig for a day or two. Pain mainly in legs (a dull ache and sometimes sharp shocks of pain) and I get ‘hug’ quite a bit which I hate (esp when tired or stressed).

It’s so hard to say really as the list goes on and on… some days I have trouble swallowing. I have double vision all of the time but some days worse than others… but usually I can still read if print isn’t too small. Cognitive stuff… again varies by the day but sometimes I get very confused. Dizziness… again sometimes very bad spinning and sometimes no more than a light-headed feeling.

Over-riding all of these and million other little symptoms is generally a feeling of being ill. I suppose it’s a bit like having a bad dose of flu all of the time (even with fever sometimes in evening).

However I count myself as lucky as most of these symptoms are minor… except when you put them all together. Hard to say when different things happened. Mostly they sort of creep up on me and some of them hang around and other last only a day or so.

Well done you for still working!!! Along with all the above (and more!) I think the fatigue is the most disabling and is why I gave up working. That is with me every day. Sometimes just a general fatigue where I spend a lot of the day resting. Sometimes more severe when even getting to the bathroom is like climbing Everest. Sometimes very sudden… like someone has pulled my plug out… and it feels like I can barely breathe. Can’t talk. Just have remain where I am and wait for it to pass. Really quite scary although I’m used to it now.

So I haven’t had the sort of stuff where you wake up one morning and can’t move legs or whatever. In that way I count myself lucky. Touch wood mine will remain this slow and steady.

Well David you did ask and as you can see, given the encouragement I could go on and on… and on… LOL…

One more thing… I never ever catch a virus. Haven’t had so much as light head cold for years… so my immune system is most definitely on daily battle alert! I think the flu feeling, fever etc is all linked to that.

Pat x

Hi David, well the jury is still out on whether or not I have PPMS. But after 14 years and having seen 13 neuros, I reckon I do have it.

My own journey progressed quite quickly. It began with tripping up and feeling as if my left leg was made of solid wood!

I also had some pretty nasty spasms in my arms. The bladder was a bugger to cope with! Likewise the bowels. nerve pain in my legs and bum cheeks was savage!

I needed a wheelchair part time, within a year of starting problems. Been a full timer now for 8 years.

My odd sensations include cold wet feet and legs, numbness in feet and pins and needles too.

Youll find that every MSers experiences differ and no 2 sufferers are the same.

Theres no prognosis........apart from saying we wont be cured…not in my life time anyway!

Nevertheless, life can still be good and rewarding and we just have to make the best of it, eh?

look after yourself.

luv Pollx

Hi David I was dx in Dec 2011 but have had symptoms for about 6 years. The first one was bladder problems followed by walking difficulties about 5 years ago. I also have dreadful balance and dizziness problems, as well as pins and needles in my left hand. I have increasing weakness in my hands and a lot of pain in my legs which is mainly in my quad muscles. The walking has deteriorated quite a lot in the last year and a half, as has the bladder. I need a stick always when I am out and sometimes at home or just use the furniture and walls to help me. I am nearly housebound atm with the bladder problems and am hoping to see a continence nurse soon. I have felt quite low lately but have been generally quite accepting of my lot. I have four wonderful sons and a husband who works tirelessly for us all. I have a lot to be thankful for. Take care, Teresa xx

Hi David,

I was dx in Jan 07 and nothing happened untill Feb 10. After walking about a half mile I started to limp slightly and gradually got worse. Last Sunday I tripped and fell on the garden slabs, later I fell while crossing a quiet street and was using my electric foot-lifter at the time.Fingers in my left hand are becoming useless,I have ballance problems making me unsteady on my feet,I get a funny sensation in left leg and have to keep moving it. When I wake up in morning,sometimes the fingers in left hand open and close rapidly and my left leg appears not to belong to me or out of sync with right leg.I get cramps in the small toes of my left foot and just above the same ankle .Oh, I forgot to mention short-term memory loss. I’ve been told my bowel probs aren’t anything to do with ms.

No one can tell me what will happen next, or when.

John.

Hi David

my diagnosis came in 2006 just 3 months after my first visit to my gp, so very quickly. I started off with a dragging right foot which friends noticed in 1999 but I thought nothing of it. I went to the gp complaining of numbness in my right leg and the right hand. He refered me to the nuero and I had evoked potentials tests and a mri followed by a lp just to confirm the mri. I was reasonably mobile up until I went into hospital for an a cervical discectomy which they discovered I needed when I had the mri. After that my mobility became a problem and I was in a wheelchair for a period. The ms has been creeping up slowly on me with lots of problems in the past5 years. I need to self cath and use peristeen for my loss of bowel control. The numbness has increased into most of my body including my face causing problems with speech at times.Pins and needles are a constant problem in my hands and electric shock sensations in my arms. I have spasms in my legs and more recently in my bladder at night. I also get the ms hug which is very restricting and loads of weird sensations. I have a fes for my right foot and I now manage around my house but have just bought a powerchair to use outside as I am fed up with struggling to walk and feeling exhausted at the end of it. This sounds so depressing read back but it’s me!

Mary

Hi David

Well mine started in 1980 with a numb patch on one of my legs, the size gradually increased and my gp

sent me to see the neuro. After all the usual tests they first said I had Transverse Myelitis, but

this was changed a little while later to PPMS.

I went from using sticks to crutches, to self propel w/chair and on to powerchair some 15 years ago,

so I consider myself really lucky cos it was a slow decline. Problems now are fatigue, spasms, tremor,

weakness, pain and very limited mobility, which forces me to use my chair inside and outside. I have

had problems being able to focus my eyes, but again, I feel lucky cos I have never lost my sight.

Anyway, life is still good and having a lovely family and friends on this forum are a true blessing, take care

Pam x

I know this may sound selfish, but after reading some posts here, I’m thankful that I’ve got off lightly so far.

I’m 55 and my ms physio can’t predict what’s going to happen next.

My symptoms are getting worse gradually,in a way that I don’t notice small changes,but my wife does and I can’t get a prognosis.

I’m really glad you created this thread David so thankyou so much. I have wanted to ask about the experiences of others for a while now but I’m still waiting to find out which type of MS I have (although I’ve been told that I’m not suitable for DMDs as I didn’t respond to steroids) so was a little reluctant to. This site truly is a blessing!

Mags xx

My hubby was diagnosed in Jan 2006 - but his problems began late 2003. So now at 43, they are finally sort-of admitting that maybe he has been progressive all along. He’s now lost all weight-bearing ability through his legs - moved by hoist and uses his electric wheelchair. He’s doubly incontinent, has major league cognitive issues (gets confused, paranoid and aggressive), cannot use his right hand for much at all, tremors in his left hand (so needs help with eating), sometimes chokes. Currently in hospital with E Coli infection - caused by his bladder issues. Apart from that apparently his heart, liver and lungs are OK!

Hi sje… just really to say thinking of you hon. Very, very hard for you both.

Take care,

Pat xxx

I was dx 9 years ago. I still work full time as social work manager thanks to help from my staff team. Symptoms have slowly crept up on me and I use scooter for distance, hold onto walls etc when walking. I don’t like walking as I’m slow and wobbly but keep going. I won’t give in even though most days I am tired. But this won’t get the better of me.

hi david

think everyone summed it up(mobility pain balance bowels etc)

i was dx 2yr ago and had relapse last year and had to finish job had

turned down for dla and esa so looking for something i can do

steve

If you don’t get DLA/ESA and you genuinely have MS then always appeal against the decision. I was rejected first time and then it was changed on appeal because I told them 'PPMS is incurable, untreatable, and results in a gradual progression…remember the people at the DWP are not experts of a medical nature, whereas you, as a patient with MS, are an expert! Suggest they write to your neurologist or GP and they’ll soon reverse their decision.

I have also been refused e.s.a, I was diagnosed ppms back in August 2017 and because I can sit for more than 10 minutes, move my hands up and down and use a laptop, I’m capable of working, not once was I asked about mobility or what I could do from day to day,I think any assessent should be done via your own neurologist and not by someone who is obviously under qualified,I appealed back in March of this year,I’m still waiting for a result, also what makes this whole thing even more awkward is that my own sister works for the DLA and she’'s not allowed to help me as it would be seen as favouritism.

Hi David, I was dx 2 years ago after 3 years of symptoms with ppms, I know I’m fairly new to ms and have the usual issues of poor walking,balance and bladder issues but yesterday rode my bike for 2miles at 12.5kph on a cycleway. I could have gone further but was only just taking it easy to find out how I’d feel afterwards. I must admit it was a bit tricky and I suppose it was like when you first get on a bike and can’t balance properly but it got better. The biggest problem was the muscle fatigue in my legs which caused getting on and off difficult but still worth the effort.