Forum

Advice please

When I was dx PPMS my Neuro basically said no medication and no cure. When I look at the MS sites and read some very sad posts from people with horrendous problems I cant help thinking is that what Ive got to come? I am almost in a wheelie with terrible balance problems but what really worries me is bladder and bowel concerns. At present Im reasonably well there. I know this affects people differently but is there a certain time after dx when I could expect to get worse? Im coping ok at present but the future is keeping me awake at nights with worry. Thanks.

I was diagnosed with MS in 1973; 39 years ago; turned out to be PPMS. In wheelchair in 1980 but still lead a life a lot of healthy people would envy.

So yes it is different for PwMS; I look on myself as (I know it sounds strange) lucky; I hope some of my luck comes to you. Remember MS is not a stop sign its traffic humps.

George

Hi anon I am rrms Bladder problems yes horrible but mine are managed well with tablets and intermittent self catheterisation - scary but easy and gave me my life back. Which was constantly searching for toilets and wetting myself. You don’t say what your concerns are. There are also other treatments depending upon the problem like Botox. Bowel problems I have these too. You don’t say what your problems or concerns are. If known I perhaps could help from my experience. Bowels can be very embarrassing to talk about so pm me if you wish to keep it private Hugs Min

Your neuro is correct, but many (including me) find the unapproved ldn to be an effective treatment. Take a look at the information on www.ldnresearchtrust.org and see if you think it might help.

Hi,

When I was dx in 1995 nobody said what kind of MS it was but I didn’t have relapses so it might have been PP. I only started really deteriorating 3 years ago so I had more than a decade of stability. I say I’ve got SPMS now because that’s what it feels like but it could be PP finally on the fast track.

I use a wheelchair outside (and sometimes in) and my bladder is dodgy but my bowels are OK.As each new symptom arises I cope – you just get on with things because there’s no option. Life is good. Don’t worry about a future that might never happen and even if it does it’s never as bad as you think it will be.

Love George’s comment “MS is not a stop sign its traffic humps.”

Jane

When I was newly diagnosed and fearing the worst someone gave me this advice, “Don’t worry too much about what might happen, because it might not.” xx

You should try not to dwell on the badge you’ve been given. The neuroligists have to quantify things,but in MS all they choose to use are Primary,Secondary or Relapsing Remitting…You have your very own version of MS 'cos you are you. There are and will be broad similarities with the rest of the membership of our club,but day to day it’s your version.

You will find ways of coping day to day,but need to be mindful of the future and try to have systems and perhaps equipment in the background.As for what the Neurotic said,yes there is no cure,even though they’ve been -uggering around with MS for 90 years.As for no drugs that is down to you,your GP and your wallet.

I reckon George is an outstanding example to all of us,so what does a badge mean.

Wb

Thanks everyone.

Hi, just want to add my 2 pennarth!

PPMS does not currently have a drug to slow or reduce progression. BUT, as Im sure youve seen from others, no-one can say how someone dxd with PPMS will end up`.

There are many drugs to help with the symptoms.

I have undx`d PPMS like symptoms and clinical presentation. I did progress to a wheelie full time, quite quickly.

But I still enjoy life and think it is still possible to enjoy life on wheels!

luv Pollx