Confirmed ms- no lp. Which treatment to go for ???

Have you been told youll need care and wheelchair or is that your worry? I am trying to be positive but scared i will end up in wheelchair soon :frowning:

Have you been told youll need care and wheelchair or is that your worry? I am trying to be positive but scared i will end up in wheelchair soon :frowning:

The whole point about access to DMDs is so that you avert the disabling relapses. For at least 10 years I used to say to people that ‘I’m relatively lucky, I can still walk and work and it’s all life as normal’. And that was true.

I didn’t have the option of a DMD for the first 5 years as they a) I wasn’t diagnosed on the first set of tests and b) DMDs weren’t available anyway. They became widely available in 2002 (my year of diagnosis). But I was unlucky, all that was available were the beta interferons and Copaxone. The first I tried (Avonex) gave me quite severe cognitive side effects. Then I took Copaxone for 5 years until it failed. Subsequently, I have tried Tysabri and Tecfidera. Both gave me side effects that meant I had to come off them (for eg, Tysabri gave me hepatitis - a fairly rare side effect, but I have a problem with my liver in that some drugs just make it go haywire).

So I have had MS for 20 years. I’ve only had a not particularly efficacious DMD for 5 of those years. I had a blinder of a relapse 5 years ago and have been unable to walk since then. This is not entirely due to the relapse. It’s also due to the fact that I have foot drop, which I’d already had before the relapse, but it took until 2 years ago for me to get an FES (functional electrical stimulation) to help with that. By which time my muscles, especially my core had given up the fight and the rest of my body just won’t do anything I tell it to now.

This will not necessarily happen to anyone newly diagnosed with relapsing remitting MS. You have on your side

  • effective DMDs
  • physiotherapy - get and keep your core strong to avoid physical deterioration
  • this site and others to learn about MS, get help, support and information (Shift MS, the MS Trust, the Barts Blog etc)
  • access to things like orthotics, FES, other means of sorting problems before they become unsolvable
  • the internet (obviously we tell people to avoid Dr Google, but there are reliable sources of info once you are diagnosed)
  • steroids to bring serious relapses to a quicker conclusion (that’s in case your DMD fails you)
  • access to bowel and bladder nurses and good products to help if needed
  • other drugs and therapies to help with symptoms
  • and finally MS nurses - a good MS nurse is worth her/his weight in rubies

So don’t think because you are diagnosed with MS that life is over, that you will inevitably end up using a wheelchair or needing care. It is possible of course, nothing is set in stone, but you are living in a different world to the one I started my MS journey in 20 years ago. And wheelchairs and care needs are not the end of life as we know it. It’s still possible to have a good one.

Sue

Thank you for your insight sue - you are inspirational

worried123 I was just worried at first and all sorts went through my head. I’ve been told I have ms- that’s all, the rest I have invented in my head and worried that the worst is to come

I am now believing that it might not be that bad

and if it gets that’s bad- I’d best make the most of what I have now

Emmakay I am agreeing with your outlook. None of us know what is around the corner good or bad so we just have to make the best of each good day. I am really worried too and it is only natural as I found out the GP and neurologist suspect I have ms only a couple of weeks ago. Prior to that I was a very active sixty something woman, going to the gym, zumba, badminton and walking lots. Now I wonder where life is going to take me. I have never smoked and hardly ever drink alcohol and eat a healthy diet. I just wonder if there is a common denominator between us all???

I think just being humans! Bodies seem to do as they like. I used to say look after your body and it will look after you. Apparently not In my case

And the rest of us.

I dont get it either. Ive been healthy all my life. Eaten properly, exercised, not smoked, had a drink now and again.

So I must have done something else pretty bad to have this put upon me.

Oh well. Better get on with it.