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Has anyone else got SPMS?

Hi All Has anyone else got SPMS? I have, but most of the threads seem to be from RRMS suffers, I do feel for you not knowing if today will be a good day or bad, but every day is a bad day for me, and each week I seem to be going down a slippery slope.Sorry to sound off like this but hope that someone can tell me what to expect, I know everyone is different and this thing is different for anyone, but please can you help? Feeling sorry for my self today, don’t like the cold weather. Deborah

Hi Deborah I’m SP too and have detirioated over the last 3 yrs going slowly down a slippery slope crap init? But then I’m thankful I wake up everday have a great husband all be it never see him :frowning: but got a good family & a few good friends. I can’t say how bad things will get as everyone is different I just hope that I can continue to get about with my stick (not that I get about much these days) Try stay positive & look at the good things in your life I know it’s easier said than done love but thats how I try to get through it. Sue xx

Deborah, I too ha SPMS, I just recently progressed to that according to my Neurologist. Can’t offer much advice, other than, believe your not alone. My slope is just starting , started walking with the stick more a dn more, more burning sensations in my legs, more cramping in my feet, and the fatigue is really bad, but so far nothing too bad. One day at a time for now. :slight_smile: Greg

Thanks Sue thought their was someone out there with SPMS like me, thanks for your words, I do have a good Husband and son that helps a lot , i was only dx in June, though I had suspected long time ago, it does explain a lot of things I went though over the years, anyway most of the time I do stay strong just feeling sorry for myself today, could be as I called my Mother in Australia to wish her happy birthday ( all my family live there) Thanks again Deborah

Thanks for your comments Greg, one day at a time! All the best Deborah

Hello Deborah. I’ve only just recently been diagnosed and I don’t know yet what type of MS I’ve got. I’m waiting to see a MS specialist in York in december. Considering my symptoms I have a feeling he’s going to tell me I’ve got SPMS. I’m in my fifties had a lot of crap in my life and lovely things too. For some reason I always have this childish hope that things will work out for the best…as long as I keep this feeling I’m ok. We all get times when we feel down. Chin up, once new is year out of the way the days will get longer and spring will be here before you know it.

Deborah I feel sorry for myself most days but life goes on, I spend long days on my own & the nights are even longer but I’m thankful for this forum I dont post much but do have two very good friends on here that I pm most days and I dont know what I’d do without them they are my outside world. It’s always more difficult when your family are away I know this because my hubby is prodominantley in Germany :frowning: Sue xx

Hello Blossom thanks for you email, seems silly for me to say hope everything goes ok with your MS Consultant, but I’m sure you know what I mean. I have great medical people behind me in Essex, my MS Nurse is fantastic, if I need anything I can call or email her she is always there to help. By the way I turned 54 a couple of weeks ago. I’m trying different medication at the moment, hopefully will find something that helps, early days yet. My consultant did say that on the natural side of things, green tea, evening primrose oil and B12 can hurt, so I am taking them as well as the other meds I have been given. Keep we’ll or as we’ll as possible. Deborah

HI Deborah

I also have SPMS, I’ve been diagnosed 7 years.

SPMS is as unpredictable as any other type of MS. I hang on to the fact that it can plateau, I’m still waiting! Nothing is certain.

Take care

Anne

Hi Deborah

RRMS for first 12 years after dx, then SPMS for last 3 years (-ish).

Bored with MS now, so I’d be more than happy to give it up …if someone (anyone) could please show me how ??

Dom

Hi Deborah

I’m classed as S/P with relapses, I still on Betaferon but the last lot of steroids did nothing and things just stay the same and seem to be getting worse. Just a thought but I sometimes posting on PPMS website as they do n’t mind sharing with us SPMSs and have pretty similar problems.

Wendy x

me too Wendy,im spms with relapses,have yours got more severe over time, i know mine have,just answered another post about it,and said i suspect i am progressive relasping,but dont suppose theres much difference.

J x

It’s hard to say J, but they keep on coming, I have a flare up about once a month or so, with nerve pain and permanent ‘hug’, and legs feel heavier and everything’s getting slower. I can still get out on my buggy though and can still walk a short distance so better off that others.

Wendy x

To Amazon lady and the gang.

I was told this week that i now have SP MS. Not good is it? There is not a lot we can do, except to live our life the best we can. I have some wondefull friends. A great husband and a fantastic son. Two amigos that take me out for lunch ( i am the 3rd amigo) so i think i am a lucky lady. I take the good days with the sh*t days as they come. I try to smile at everybody as i find this helps to make them feel much better as i can,t stand them feeling sorry for me. To Amazon Lady i send you a hug and wish you well.

Jane x

Hi There, I have SPMS too. Was diagnosed 5 years ago, aged 20! I am going down hill slowly, mobility has got a lot worse and so has the fatigue and the pain. I think it is important to think about what you consider to be a good day for you personally and remember that we are all different and try not to compre yourself with anyone else. For me, getting up and dressed before lunch time is a good day, but for others it will be something different. I find daily household chores very difficult, but i try and find inventive ways of doing them. Take each day is it comes and count your blessings however small. If you want to chat, feel free to message me, love Bex xxx

l have been SPMS for 31yrs - as l am now 66 - it is nearly taking up most of my life. But for me - l now suffer more with the dreadful pain of osteo-arthritis in what was my ‘good leg’. lts taken the strain of having to balance and hold me up all these years. Waiting to hear from the hospital as l thought they were going to give me a knee replacement before xmas. l am on the cancellation list. Wish l could afford to have it done privately. ln the meantime l can hardly walk at all - certainly not without holding on to my rollator.

My ms has always been SP - so reading all your posts re RRMS - its a different world. But so far l have managed ‘to get on with it’! And hope some day to get back to riding my horse. Haven’t been out on him since April when l went for hip surgery. l do go out on my Tramper with the dogs and a friend riding my horse - so still involved.

Picked up some ‘take-away-litter’ today - [yes l am a womble] and in it was 3 bottles a Tesco Everyday Value White Rum 37% - and a litre of Schnapps and a Shiraz bottle - plus a Happy Meal carton. Someone knows how to treat a girl!! lts now in the recycling bin. l hope the ‘picnic was a result’!!