ruby 28/05/12
Last reply 5 years ago
Scary thoughts

Hiya,
Newly diagnosed with MS!! It feels like my world has collapsed. I can picture myself bed bound in a nursing home in a few years. I understand that MS affects people in different ways but aren’t we all going to end up in wheelchairs? Have you met someone with ms in their 70 s who can still function independently ? I haven’t.

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ruby
5 years ago

Nb Sorry for spoiling your mood


highheeledfagin
5 years ago

About 20-30%(depending on where you get the statistics from) don’t. I’m sorry for you – getting diagnosed is pretty hard and everything seems worst-case-scenario, but there are most likely many years between you and that scenario, and dealing with, and adapting to, the challenges and realisations that await you will eventually put that into a more bearable perspective. It’s difficult, but the more information you get and the more you get a sense of just how varied everybody’s experience is of this is – and being a member of a site like this will help you with that – the more prepared you will be to deal with possible outcomes hopefully much further down line.


ruby
5 years ago

How long did it take you to come to terms with the diagnosis


highheeledfagin
5 years ago

I’m ten years in and I’m not sure I have come to terms with it. That’s not very helpful but you go through periods of thinking everything is going well and that you’ve done this enough to take anything that hits you, then something catches you off guard and you can feel utterly defeated…but you develop mechanisms for coping. we all have a week or two of feeling sorry for ourselves, and being newly diagnosed will probably be the longest period of that you have.


Sarah_T
5 years ago

Hi Ruby

No I haven’t met anyone in their 70s with MS but then I haven’t met anyone with MS yet. I’m newly diagnosed too, just a few months. Those first few weeks are a hell of an emotional
rollercoaster so I can understand why your thoughts are all doom and gloom.

For me though the diagnosis was a bit of a wake up call. Our bodies, amazing though they are, ultimately are fragile and need to be treated with respect. With that in mind there is
an awful lot you can do to halt/manage the monster that is MS.

The outlook these days for someone with MS is so much better than 30 years ago. The drugs out there can slow it down immensly and the knowlege about diet and wellbeing are other
great tools in taking control of it.

I’ve been very lucky, I could barely walk when I got my diagnosis but now have recovered so much I haven’t a single symtom (as long as I don’t over do it!). This means I want to do everything I can do enjoy the life I have been given. I have an extrememly full diary these days but I love it.

x


inesmartins
5 years ago

Hello ruby, welcome!
I know how you feel, Those thoughts went to my mind too. Now I feel fine.
It’s scary not knowing how it’s going to progress, but you know, we dont know nothing… We with MS dont know how the future its going to be for us, but people that dont have MS dont know how their futures its gonna be too… Their lives may end up worse than ours.
Probably youre going to live for a longggg time with no need of a weelchair so dont stress, dont think about it, enjoy that you can walk fine.
**


inesmartins
5 years ago

PS: And probably we dont know anyone with MS in their 70s because the diagnosis and treatments 30 years ago werent the same as today.


ruby
5 years ago

Thank you so much! It does help to know you not the only one feeling this way. U do wonder why you N not someone else but then you realise there are people in worst situations.


highheeledfagin
5 years ago

And there has been no better time in history to have MS, we are the most fortunate generation yet when it comes to the advances they have made in both medication and knowledge.


daisy
5 years ago

Hi Ruby,
I completely understand how you feel and sometimes it’s hard to know what to say to make people feel even a tiny bit better – this sucks. That said, I just wanted to let you know that I met an amazing lady when I went for a massage who told me she had MS, four children, four grandchildren and was still managing to work part-time. That’s more than many people will have in a lifetime! Take care hun xx


ruby
5 years ago

Wow that’s amazing!! Thank u so much! Very helpful! I am feeling better already! Why worrying about something that might never happen and also who knows if I ll make it to my 70s anyway. I think having ms make you aware of your own mortality and makes you more spiritual. I believe in God And this helps a lot. It’s the only way I can make sense of what s happening to me.


bubblesgalore
5 years ago

sending lots of love to you ruby. i felt being newly diagnosed was a horrendous time for me. I have been diagnosed since march. I must have spent two months with my mind whirring away with the what if’s. all i can say is that i have just returned to work after 3 months sick leave. i didnt think i would be able to do lots of things, and there are days that i am still vulnerable, but taking each day as it comes is the only advice, until you’re strong enough to think of planning ahead. it will come…. i promise xxxx


lynne
5 years ago

@ruby….i was diagnosed at 21…am now 44. i have always worked although very part time now. i take everything in my stride and live each day as it comes.i have 2grown up children, pets, home, husband, holidays, great friends. i dont project (do the what ifs and if onlys) its not helpful. i count my blessings for the things i have and can enjoy, watch, see, do. i laugh alot and dont take myself too seriously. i keep my cup half full (metorphorically) because there are people worse off than me. embrace what u have and dont dwell on what you dont have.when u get over the shock you will learn to live again xx


Anonymous
5 years ago

I don’t think i will ever get over the fact i have MS. Although i was diagnosed in 2007 i knew i had MS since 1997. First symptom occurred in 1988. I am still pi**ed off and angry, but time has mellowed me a little.


cameron
5 years ago

As far as I know, the stats don’t take account of the DMDs, which are relatively new so existing predictions may be wrong. When I was diagnosed in 2003 I didn’t know anyone my age with a lifetime condition. Now, nine years on, friends my age are beginning to get things wrong with them! The beginnings of heart problems, arthritis etc. I don’t wish anything on anybody but it has reminded me that people generally don’t keep a clean bill of health forever! Also, people have balance and walking problems seemingly as a natural part of ageing. Several friends have stopped climbing ladders, using chain saws etc… just because they’re scared of falls. So.. over the nine years in a curious way I’ve felt less of an oddity. The MS has forced me to take care of myself in a way that my contemporaries haven’t necessarily, so in that sense too I feel quite upbeat about the future. The good diet, exercise etc. forced on us may just pay off!


lightningduck
5 years ago

stumbler
5 years ago

@lightningduck , that video always leaves me with a tear in my eye……..


lightningduck
5 years ago

@ruby

Not everyone with MS or similar diseases is in a wheelchair due to disability for the disease. Some/many simply do it to conserve energy because walking is fatiguing and its better to keep the energy for things that truly need it

When I was fist DX’d, I met someone else who had MS much longer than I. She gave me a bit of wisdom “We’re all going to be back in diapers eventually, some of us will just get there sooner”

I was DX’d about two and a half months ago. Yeah, that first week or so is hell on your emotions (it was for me at least because I went from flare up symptoms to dx in less than a week; not sure how some like @se7enity who have it build over years deal with it)

I’d like to think I’ve come to accept my DX. I’ve only been here a few months so it’s not like I’ve been living with this as part of my life day after day for years like many so it’s hard for me to even feel I have the right to say much about “living with it” but I think mostly thanks to a great family, I’m doing ok

But somedays, I’ve done it and I’ve seen it in those with it much longer than I, some days you will just wear down your emotions and cry in your beer or in a friends arms and say to yourself “damn, this really sucks, ya know”.

…and the next day you move on with living again

@stumbler – me too, man. I’ve seen it a few times and I watched it again for ruby and I’m still wiping away the tears.


Anonymous
5 years ago

Hi Ruby,

The first few months after diagnosis are very scary; I asked my doc when I was going to die. My daughter asks me that, too; even though I was diagnosed 12 years ago. Ha! They can’t get rid of me yet. I don’t know that you will ever get used to the knowledge of having it, but you do go about your life in spite of it. And sometimes you even forget it’s there. I have met several people past 70 with MS who don’t use wheelchairs and enjoy life. Hold on to what you do have and remember to enjoy the little things.


trace75
5 years ago

Hi Ruby, you definately know from this website that you are not on your own. I was diagnosed with CIS earlier this year with 80% chance of another episode. Due to start treatment on 7th Sept. I thought i would not get back to work, driving or riding my motorbike again but i have done all 3. I hope you can have those days that you can forget you have MS and enjoy life to the full :-). The thing i have difficulty with is telling my family (well i don’t want some of them to use it as good gossip!!). Hope you have a good support network around you as thats a big help. An old neighbour of mine was in his 80’s with MS and went swimming every morning.
Trace


lightningduck
5 years ago

Word, @trace75


lightningduck
5 years ago

FWIW just to add to this…

My daughter and I both happen to be Alan Parsons Project fans. About a week after my DX’d I was sitting in a bar in Phoenix consoling myself a bit and she sent me a song

Nothing Left To Lose
http://www.youtube.com/watch?v=0o9yjp5MqKo

When it reached the lines

“You gave the best you had to give….you only have own life to live
You fought so hard you were a slave, after all you gave, there was nothing left to save”

I just lost it and broke down sobbing in the bar

Part of it was probably because my 17 year old daughter and I had trained martial arts together for years; we fought and sweat and bled and triumphed for our 1st Dan test and there was a certain amount of fatalism in this that, no matter how strong of mind and body I could make myself and not matter how much work and pain and effort I put into my life, this came along and there was no way I could stop it. She was there for it all in that part of my life, and this was her way of crying for me


lloyd
5 years ago

I do know a man who is 79 and has ppms like me from another site he walks with a cane and uses a coil spring orthotic for his foot drop and he said its the best thing ever. He has had ms since the late 70s, so just take it one day at a time it’s a big shocker hearing the Dr say ms and it will take time to adjust your life each day to do things differently. I was dx 2 1/2 years ago and didn’t believe the Dr when he told me, so ignored him and went back to work like nothing happened not starting meds or anything. One year later I landed in the hospital for three days while they pumped me up with IV high dose steroids and I have been disabled ever since I went through anger, rejection, till I finally grieved it and now I have come to acceptance. It’s not an easy process, but you are in the right place as I have learned so much from these forums.


lynne
5 years ago

There was little or no support or treatment 23 years ago when i was diagnosed. i think ive come through the resentment stage and as cameron says further up the page, everyone has their own problems. for me, i feel i dont have any choice but to cope with this as best i can. why waste time and energy of resenting it, i cant fix it. i dont have to like it but i have no alternative other than accepting it…..its not going anywhere.


pottypete
5 years ago

I’ve known many aged sufferers up to people in their 80’s. Life goes on, although not as you may have thought. Make hay while the sun shines and take each day as it comes.


hugmachine
5 years ago

Welcome to the club no one wants to join ruby!
i got diagnosed around 18 months ago, been on treatment for a year. just being diagnosed is the worst thing cause you’re all in your head. At the most basic level its fear of the unknown. Realising i couldn’t plan everything the way i wanted it freaked me out – im a woman who always has a plan – but you are in control of your MS. It wont feel like it right now but your life is still in your hands. you can choose to take medacation or not. you can choose to try diffrent diets, yoga, physical therapy or alternative remadies. you can still do everything you wanna do, you just have to have a few contingency plans in case you get tired or sore. You might end up in a wheel chair, you might not. you will drive your self crazy trying to predict the future.

And this is a good time to have MS! there are more treatments in the pipeline, clinical trials and research. Im in edinburgh and they are currently building a neurological research facility at the hospital. part of its remit is to find a cure for MS. its been partialy funded by money from Jk Rowling. She donated millions as her mum had MS. Part of what they are gonna do is find out exactly why pregnant MS patients get better during pregnancy. in 5 or 10 years who knows what they will have discovered.

Don’t be scared to cry, shout, scream, swear, throw pillows ect. Your allowed to be angry and upset. your right at the start of your journey and we all remember what it was like to be there. but it does get better i promise!


f3ng5hu1
5 years ago

Thinking about the future too much will only mess with your head big time.

I have to agree with whats generally been said, one day at a time that’s the only way you’ll get through this.

It’s not the end of the world, though it is, at first, devastating news. The truth is, it is so varied, no one predict how it is going to go. So don’t think the worst too much, stay positive.

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