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Secondary progressive - deteroration

Hi everyone, check in just about daily but haven’t posted for a while. I am SP and have been for quite a few years and have had a noticeable major deterioration in the last few months.Now can’t walk, losing use of my hands, becoming more disabled by the day. It seems everyone on this site is ether on DMD’s or no way as bad as me. I do know that everyone is different but I am feeling so alone and do feel I’m now in the final stages.This isn’t going to get any better. Doing all the positive stuff like physio, mindfulness, taking the relevant meds, talking to my ms nurse but nothing seems to be helping. I know this only gets worse but this is ridiculous. How much longer and how much more deterioration?

I could go on and on but don’t think it will make any difference.

Linda x

Linda,

sorry to hear about the deterioration.

i’ve been secondary progressive for about 6 years and relapsing remitting for about 10 years before that. Was doing reasonably ok up until Christmas. Since then there’s been a rapid decline, so much so that I can hardly walk and have spent the last week almost completely in a wheelchair. I’m praying that this is a relapse but the longer this goes on for the more unlikely this will be.

Right now I’m scared and frustrated.

derek

Hi Derek, hopefully what’s happening to you it’s not permanent, but we never know. I have been told that I now have to accept what’s going on, but that doesn’t make it easier, I just want it to stop, but it won’t. I, like you, had a lot of good years and I knew this disease would get me in the end but not as aggressively as this. Horrible to say, but I’m glad I’m not the only one! Linda x

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Hi Linda and Derek

Yes this MS is a scary condition!

I am currently going through Early Retirement through ill health as my MS moved from R&R to SP and has really declined in the last 5 months.

I am struggling to walk, my balance is terrible and the MS fatigue has kicked in.

Just don’t have the energy to do anything.

I have an appointment with the Physio on Tuesday and am hoping to be able to go to my first pilates with mindfulness next week.

But heck I worried as am going down hill so quickly!

I used to be so positive but …

Sue xx

Sue, Linda,

i appreciate how lucky I’ve been so far on the MS journey and being SP for 6 years or so, without significant deterioration, I hoped that things were going to continue in that vein. The only times I’ve come anywhere close to what I’m experiencing now is post UTI. The difference with this episode is that there was no UTI to kick things off, this episode is much more severe and has been going on for longer.

until this month, I’d been able to work full time. Thankfully I have non-physical job in the finance sector. However I was signed off for the month of February. I"'me seeing the doc on Thursday and I am much, much worse than when I last saw him, so I’ll be amazed if I’m not signed off again.

Up up until last month, I’d been doing all sorts of exercises for years. Now I either cannot do them or can’t be bothered doing them.

Derek

I’m so sorry to hear this. I hate this disease. Being told just to accept it is really not helpful! Where is people’s compassion?

It’s not easy to accept something which takes a little bit more of you each and everyday.

I dont know what to add or say to help things but wanted to reply x

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I am going through the same, i have had ms 24 yrs now,the the last 6 yrs have been quite bad,i always thought that positive thinking and keeping healthy would keep it at bay,i now know i was being naive,i always said to myself i would cope and i would deal with the bad if and when it happened.,which is what i am doing now

I am in a really bad relapse just now after a severe infection at xmas and i can hardly stand and feel like i am loosing my mind a lot of the time, i tell myself that this bad time will pass, it has to.I have days where i think i am not going to see another one,but somehow i do, might sound dramatic to some, but oh so true.I have started writing my feelings down,i write what sort of day i am having and a list of the things i STILL can do, simple things like having a wash and making a coffee but it makes me realise i can actually do more than i thought,and makes me feel a bit more positive.

J x

Hi everyone, thanks for your replies. I bet none of us ever thought we would be in this position. I take this disease an hour at a time. I can’t even stay in bed for any period of time, which is something I always previously enjoyed. I fell at 4.30 this morning trying to get into the bathroom and spent the next two hours on the bathroom floor before I could haul myself back to the bed.Today I’m a mess, maybe tomorrow will be better. I hope you are all coping. Isn’t it amazing how I now think this is normal life!! Linda x

Sending you a hug Linda, Think we could all do with a hug.

Jen x

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Hi everyone

I rarely post on here but feel exactly as you all do. I’m SP and have been for 3 years, although I think I probably have been for longer. I took ill health retirement 10 years ago and my decline has been steady. I’ve had an ear and throat infection for 3 months now but with numerous antibiotics it’s finally much better. Just when I thought I was on the way up I got a UTI so back on the antibiotics!! At least Spring is round the corner…

Frances x

Hi Frances, i got a quinsy(tonsil abcess) xmas day,that made me very ill, and i had started with a sore throat in the october,and its only now my throat is clearing, i very rarely get a sore throat either.6 weeks after the quinsy i got a severe relapse which i am still in.

J x

Hi everyone, thanks for your support, it’s nice to know I’m not alone. It’s my birthday today and so far it has not gone well. The deterioration is continuing and now it seems my ms team has turned their back on me because I’m sp and there is nothing more can be done for me. It seems once you get to this stage your cut adrift and left to get on with it. I know there are no drugs that can be given (except the meds I already have). Like someone said a long time ago on this site we are assigned to the scrap heap. Sorry for the rant but I am now feeling bereft. Linda x

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Hi Linda, You are definitely not alone. I was dx SP 7 years ago and felt I was put on the scrap heap when my neuro said " just get on with your life the best you can". Not what I was wanting to hear at all. Over the years I’ve had a marked deteriation in my walking but still can a bit with the help of a crutch, and rollolator.

Every day I try to find something to be grateful for and put two fingers up to this crap.

Mags xx

Hi Linda

Sorry you’re feeling so down on your birthday. I’d wish you a happy one, but when you feel like you do, there ain’t much that’s happy about it.

I really feel for you and all the other progressives who can see that most of the effort goes into therapies for the RR. This is one of the reasons why I think it’s a bad thing to be labelled SP when the neuros aren’t absolutely certain there are no more relapses.

There is now more research being done into therapies for the SP and PP amongst us. I know that doesn’t necessarily help on a day to day basis but at least there’s some light ahead.

I suppose the thing to do is to get onto your MS nurse if you have one, get some physio help if you need it, maybe there’s an MS centre in your locality? Or a hydrotherapy pool available on the NHS in your area? Make sure the drugs you take for symptom relief are the best cocktail for your particular symptoms, I’ve been lucky enough to get to see a neurological rehab specialist who’s very good at helping people in your situation, is there anyone like that where you are? Ask your MS nurse.

Meanwhile, have the best birthday you can, if possible have something that’s a treat for you, whether it be cake or chocolate or some other birthday niceness to help make you feel special.

Sue