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Secondary Progressive - Worried

Hi everybody,

I have had SPMS for about 4 years but in the last two years my mobility has been reduced to practically NIL and the last 6 months have been really hard - getting worse by the week.

I’m really worried about what happens if it continues to progress at this rate as I’ve noticed tingling in my hands and feet in last two weeks - what is my prognosis at this stage - I’m more worried about my life expectancy at this stage - I’m only mid 40s.

Any comments would be greatfully accepted

={

Have you got good support. I really feel for you. No one will tell you as no one knows. Tingling means one thing to one and one thing to another. Are you keeping yourself well with vits and good diet. Resting and keeping positive. I know it’s frustrating but this forum is excellent and better than most neuros. Best advice I can give is try to take your mind off your illness and focus on something other. Give me your best smile. Massive hugs. Xxx

Hi Anon,

I think you know what I am going to say before you read it.

Who knows

It is understandable that you are afraid and are looking for some answers but we can’t give them. I am SP too so I know exactly how you feel and I wish that I could tell you that if A exists today then it will be B tomorrow.

I sometimes feel that my life is like a runaway train going downhill and wish that I knew what was happening but I can’t make predictions (and it’s probably just as well) It sounds trite but I really do try to live in the moment. I definitely don’t think about yesterday and I try to keep my mind away from tomorrow. It may be ostrich-like but it’s the only way I can cope.

Jane

Hello anon

I’m primary progressive…diagnosed august this year. My way of coping is to try and take each day as it comes.

I really don’t want to think too far ahead. I have no fear of dying, I was a palliative care nurse. I’m just concerned about the way my life ends.

Just concentrate on the here and now…works for me

Hi everybody and thanks for your posts.

I did the ostrich thing for years when I was RRMS and it was the worst thing in the long run as I didn’t start on betaferon and tysabri until it was too late.

I’m very concerned too abour my life ends - I have two daughters and a great husband and I feel I’m already more of a liability to them than anything else - what will I be like in another few weeks/months - I’m very scared! no I’m terrified.

There was a story in news lately about a lady in Ireland who wanted to end her own life due to MS. She has since passed away but her description of her life is harrowing and she was diagnoseD 8 years before me and I’m feeling thay maybe I have only 8 more years - and bad ones at that - in this life.

Doctors tell me that things could level off for a while but as you all have said - nobody really knows.

I do eat well and husband looks after me well but it doesn’t seem so make much difference.

I just didn’t imagine that SP would be so rapid - my RRMS was pretty slow with almost complete recovery after relapses.

I’m sorry for being so negative but an finding it very hard to be positive at this point ={

Hi,

I to feel much the same as anonymous. I’ve got secondary progressive, and can hardly stay on my feet. I feel I’ve reached a point where I’ll have to consider a wheelchair in the house which I know will bring its own set of problems. Its a very scary time when you can feel what independence you had being taken from you. I’m finding it difficult to talk to the family about it and just hope it will get better. How do people cope with it? I know I’m still stuck at a ‘head in the sand’ stage.

Diane

Hi

SPMS since 2009 and my reaction is - so what!

Can I change anything - no. I decided to live for now and do only what I like doing. I only have contact with friends and relatives who have a positive attitude - I don’t want any negatives in my life - I have enough to deal with.

I found the management of time with MS to be helpul and have taken Spoon Theory to heart. It works and means that although limited I can get on and live. I know that I have always had a fierce competative and independent streak but I am still human and I do have my moments of saddnes but I don’t want to punish or limit myself in a selfinduced way - I hope that makes sense.

Some symptoms are pants. Some are frightening. Some limit life. But there is still life. The world is a wonderful place full of marvels and I may not be able to travel much anymore but I can bring the world to me. Facebook, Pinterest etc. When I am sad I look outwards, I have goals and produce work for exhibition which I know will come to an end sometime but I refuse to meet it half way.

We are all different, our symptoms vary, what one has another does not. When I could not walk I just thought that like other symptoms it would come right again (perhaps with some differences) and it has. Walking is hard work, pain fluctuates and is sometimes hard to deal with and fatigue has to be accepted upto a point. If time is managed fatigue is reduced - learning to recognised my limits has changed my life.

I hope that you have a healthy and happy new year and that you learn to set up your days to suit your bodies demands at a given moment.

Cheers

Moira

Hello Anon,

You are only human to feel the way you do and MS can give us a really rocky road. But one plus point I find at this time of year especially, is that the seasons will soon change. People with MS are always at their worst aroud Dec/Jan so don’t be too dispondent. I hope that you are soon feeling better. Big hugs,

Moira

Hi there folks, my husband has spms, has been wheelchair bound for five years. I am my hubbys carer and i feel very much alone. We have four young sons, eldest 14’ youngest 7" two inbetween. Life can be pretty hectic in our house most days and routine is of upmost importance. My hubby “stephen” is a fantastic father and does his best to help. He cant do much for himself now and relies on me for all his personal care. This has really changed our relationship, which has caused problems. We live in england away from family who are all in northern ireland. Social services have been pretty crap, they offer me loads of tea and sympathy and chuck a lot of aids and equipment at us, thats about it… The strain i am under is beginning to tell on my own health. Ready to explode actually. Things are so hard for us all and i feel so guilty that our kids have got to watch their father struggle to do basic things like move… He is in hospital at moment having steroids as things became so difficult. I am so afraid of our future, things are looking very bleak with talk of care homes and our little family being broken up all because of this crappy ms… I would really love to chat with anyone who could offer some support, sorry for rambling on there, its the irish in me. We just go on and on and on, lol… Take care folks…

Hi all - it’s me again,

I, like Diane, really need a wheelchair but don’t want to admit it to myself (out loud) or to anybody else. Does anybody feel that physio exercises help? I’ve stopped mine in the last month as I really am not able to do them any longer.

I’m due to go back to work next Monday and am dreading it - have been off for nearly 4 weeks and even in that time things have gotten worse for me. I was barely managing as it was.

That’s another thing I’m dreading - having to give up my job in the not too distant future and how I might occupy my time.

Thanks Moira x 2 for positive reactions and I look forward to getting out of winter and christmas seasons as it’s hard going at times.

Any thoughts on physio and exercies as mobility declines would be welcome

x

Hi All,

I think what Moira said is right about the seasonal thing and after the additional stresses over Christmas, it can leave you feeling low and exhausted. A few days on, I’m coping with things better and feeling more positive.

I had to give up work 2 years ago, from a job I really loved. Work had made all the necessary adjustments to help me stay in work, but it finally became too much. I still miss work and the people I worked with but now see more of the children and my husband and volunteer for 1/2 day at the Citizen’s Advice Bureau. The local MS group organise alot of events as well which I’ve now got time to go on. I also sing in 2 choirs. Lifes still busy, but with different things - mostly things I want to do.

I think I’m having a 'glass 1/2 full day today!

Love to you all

DianeX

Hi, I understand how rapid progression can scare you silly.

My own condition progressed VERY rapidly, mobility wise. Within a year of falling, spasms, bladder and bowel problems, severe pain, I was using a wheelchair part time. Just a year later I was a full time wheelie. I have now been like that for 10 years. I am also hoisted for every transfer, as I lost my standing strength last year.

I dont have MS, but was mis-diagnosed with PPMS for a long time, so I did learn quite a bit about it. I have an incurable, chronic illness.

My current diagnosis is only a half one. Neuros know what it isnt, but they can only guess what it is. I may never get a full and complete dx.

However, back to you and also to some of your respondents re wheelchairs.

I know, of course i do, as I have been where you are now…no-one wants to need a wheelchair from choice…unless they have a wheelchair festish!..but let me assure you that life on wheels isn`t really as bad as you may imagine.

For me, it has meant I dont have to stay in bed or in the house. Without my wheels, life would have been thoroughly miserable!

Yes, it does mean the house you live in has to accommodate a wheelie. My house has had to be adapted. Most of the work we did ourselves, via bank loans, or with the help of the council or charities. If you wish to consider altering your home and have no idea how it can be done, then ask for an assessment from an OT. I have found these bods to be a huge help more than once. the only problem is that they cant wave a magic wand and come up with the money themselves and therefore waiting lists can be incredibly long. I have just been on that particular journey myself. I needed a new wet room and my OT put me forward as urgent.

BUT after 9 months of waiting, I rang the council up to ask where I was on their list and was horrified to learn I was number 160!!! yeh, 160!!! That meant at least another year. So we bit the bullet and got a bank loan. The result is I now have a spacious, modern, very user friendly wet room…it is to my own design and I chose HOLLYWOOD as a theme.

Back to you, the original anon poster…please try not to take to heart, the awful stories about other MSers. It is rare that an MSer ends up in such a terrible way. And there is no-one who could give you a prognosis…no-one at all…thank heavens…they could be way wrong!

Find and use all the help you can. There is lots of help out there. Never refuse help. Pace your activities. be good to yourself.

And here`s another suggestion for you and particulalry for Nikkitheirish, I use Direct Payments to pay for extra carers, to give my hard worked hubby a break.

I need full time care, and 1 person cant possibly manage by them selves. have you thought about applying for DPs? It does look a daunting system, but I promise you, once in place it is an absolutely marvelous way of living.

If anyone would like to ask me more about it, please do.

Rights, I`ll shut up now!

luv Pollx

Thanks Diane & Polly,

It’s great to get a bit of positivity - and all that you say Poll makes sense - just hard to take the necessary steps (wrong choice of phrase I Know =)

I know about your experience with baclofen Polly and am reducing my own dose at the moment before I go back to nuro as I am unsure wether it is helping or hindering me>

I have had contact with an OT recently but things have deteriorated majorly for me since then and he only got some basic aids for me eg shower stool and grips.

Not looking forward to tomorrow - getting back to work or not? Big decision looming very close at this stage.

Talk soon

Hi Nikkitheirish

sorry I’ve only read your post properly just now - talk of a care home must be devastating - that’s exactly the kind of thing that worries me greatly - I’ve got the Irish in me too.

I totally get the thing about your husband and mine trying to run the whole show single handed and I also worry about how much he can take

Always new problems around the corner

I always seem to follow Poll with an “I love my wheelchair” post - we must sound like a double act.

The truth is my wheelchair has saved my life. With it I am able to get out and about to do many things. I go to a local MS Chat group, I’m on a residents committee, I can go to my daughters on the bus. To be honest I do anything I fancy.

Prior to getting the chair my life had narrowed to nothingness. I was afraid to go out in case I fell. I wouldn’t even do things with people I knew well because getting from A to B was so difficult.

I can still shuffle about the house but anything more demanding requires my shiny red wheels. I moved house into an adapted property so I didn’t have to face the problems of sorting out my home but sorting out my head was another matter.

My daughter is a very forceful, matter of fact sort of person who gave me all sorts of ultimatums (go in a wheelchair or don’t go) That got me into a manual chair but my desire to be independent led to the power chair.

When I went for physio last week the therapist laughed because she said I was so used to whizzing about everywhere at great speed that I was trying to walk too fast!

There are problems in a chair – of course. I can’t reach anything on the upper shelves at Sainsbury’s for example but I’d rather ask people to pass me things than be stuck at home. The advantages FAR out way the problems.

Don’t be freaked out by a chair. It’s just a vehicle.

Jane

I also am SPMS,for years,are you taking muscle relaxants,ie baclofen or similar,if so maybe u r taking to many,making legs weak,and to relaxed,that is wat appened to me,maybe give it a try ,or mention it to doc

Please forgive me butting in, but I read this and thought, ‘Hang on, that’s not right…’

None of us will ever know for sure what would have been the outcome of doing something different in the past. This means that we can never be absolutely sure at the time that we are making the right decision! But we can never be absolutely sure that we are making the wrong one either: life’s too uncertain for that. I am a firm believer in the ‘No Regrets’ approach to decision-making: weigh up the pros and cons, decide what to do, do it, and then never look back. Once a decision is made, it is all in the lap of the gods how things will go. Nothing more we can do about it one way or the other, that’s for sure.

Alison

hi anonymous,it’s tough is n’t it. i am 42 and also sp about 4 years too. i already have the electric wheelchair even though i lost left leg and left arm first. the balance problems are too much and i can only walk on good days. its true that everyone is different but we just have to accept each day and stop blaming yourself. i thought for a while that suicide was the answer to stop destroying the futures of the people around me but high doses of antidepressants and counselling helped a lot and now i just live in the moment and see if in my very limited capacity i can give back. know that there are many of us who know what you are going through. it ain’t over til its over. keep your chin up and though you get scolded for being stubborn don’t lose all of it. best wishes cilla

Hi all,

Thanks Jane, everything you said about your life before you got your chair sounds like me - not going places 'cos it’s so hard to get rom A to B - missing out on so much I know. Even rollator isn’t enough for me anymore - no fear that I’ll be accused of trying to walk too fast=) I’m a very introverted person and I hate the attention that comes with crutch/rollator/wheelchair. I just like to blend into the backroung

Yes Wellman - I am taking baclofen - was taking 80mgs for about a month and am cutting down to 60mgs to see whether this makes a difference either way - not sure if muscles are stiff/tight or weak.

I know Alison that there is no point dwelling on decisions made in the past - I did think that I was doing the correct thing at the time but very shortly after I was diagnosed it became common to start on therapy as soon as you were diagnosed but I foolishly thought that because my relapses were so few and far beween that they would always be that way.

My struggle is getting that bit harder every day but hey I know that I’m not helping myself either

x

Hi Wellman. I to have secondary progressive ms. I have had ms for over 25 years now, but have recently been told its now secondary. I have been on Baclofen for many years, and on the odd occasion when my legs are really playing up I take Diazpam. And have been told every time I have a medication review there is nothing better they can offer. For many years it has worked, sometimes I have had to in crease the dosage when my legs are playing up. But over the last few months I have noticed my legs are becoming very stiff after sitting, and walking. I do feel the condition has changed for he worse, but as yet have not spoken to my g.p.