im new to this
09 Aug 2013 at 12:35PM
hi :)
i recently got diagnoise with ms in march at the age of 21 it took them a year to diagnoise me after doctors and nurses telling me it was all in my head.
they want t o start me on treatment in september but im scared i feel so alone at the moment as i dont no anybody else with ms or being treated for it.
i dont want to start treatment and my ms get worse, as if affects my legs i dont want to loose the ability to walk. i find it hard talkng to my family as they dont really understand what it is like being young and having been diagnoise.
im new to all this and i thought it was about time i speak out and find people who understand as i feel so alone.
thank you x
i recently got diagnoise with ms in march at the age of 21 it took them a year to diagnoise me after doctors and nurses telling me it was all in my head.
they want t o start me on treatment in september but im scared i feel so alone at the moment as i dont no anybody else with ms or being treated for it.
i dont want to start treatment and my ms get worse, as if affects my legs i dont want to loose the ability to walk. i find it hard talkng to my family as they dont really understand what it is like being young and having been diagnoise.
im new to all this and i thought it was about time i speak out and find people who understand as i feel so alone.
thank you x
10 Aug 2013 at 3:59PM
Hi hun, I am no longer young as such although like to think I
am. Just wanted to post to reassure that this doesn't mean the end of
life as you know it for you. I was diagnosed at 24 however had symptoms a
few years before this. I am now 33v still walking, and doing the things
I have always done just have to adapt slightly. I walk with a limp
after a short time but still manage to do it and have a stick just in
case but have not used this either yet. I am married, work part time
through choice and have a four year old. I worry about the future but
the thing is none of us know what that holds. In my time before my child
I partied the same as I would have done without the m.s, went on big
holidays etc etc. I built into this naps and ways to not overtired
etc...I also got into exercise and feel this helped me feel better in
myself. My exercise is not as intense now partly due to the m.s but also
lack of time with being a mummy.
I started on rebif in June and have been fine however I avoided meds till this year when my relapse rate increased. That's said I have read now that research has showed starting treatment on diagnosis is now what neuros think is the best thing. I will be honest if they had said to be on meds last year may have prevented the deterioration in my leg I would have done it. This only came from my last relapse however that said up they may not have made any difference. It's hard to say what to do hun? You might be aswell posting on everyday living for opinions re this as there are lots of people on the interferons.
I hope my post hasn't made you feel worse, its meant to make you see that life does go on, you may just need to adapt and put in some changes.
It's hard when your so young... I panicked and thought well that's it, no kids etc etc. but honestly I don't feel I've missed out on anything for fault of this diagnosis and you need to keep that chin up. Hard I know but you will do it. It takes time to come to terms with it and even now I struggle at times. We all have good and bad days, hopefully you'll have more good ones.
Take care and pm me if you need any advice or a chat? Xxx
I started on rebif in June and have been fine however I avoided meds till this year when my relapse rate increased. That's said I have read now that research has showed starting treatment on diagnosis is now what neuros think is the best thing. I will be honest if they had said to be on meds last year may have prevented the deterioration in my leg I would have done it. This only came from my last relapse however that said up they may not have made any difference. It's hard to say what to do hun? You might be aswell posting on everyday living for opinions re this as there are lots of people on the interferons.
I hope my post hasn't made you feel worse, its meant to make you see that life does go on, you may just need to adapt and put in some changes.
It's hard when your so young... I panicked and thought well that's it, no kids etc etc. but honestly I don't feel I've missed out on anything for fault of this diagnosis and you need to keep that chin up. Hard I know but you will do it. It takes time to come to terms with it and even now I struggle at times. We all have good and bad days, hopefully you'll have more good ones.
Take care and pm me if you need any advice or a chat? Xxx
11 Aug 2013 at 10:53PM
Hiya huni ..no how u feeling as i was diagonised only a few
months ago and am 26 so even though not as young as u are do feel
worried about how this will effect my life as it is a horrible disease
we have no idea how it will develop... there will be so many people on
here who will no what you are going thru hun and even though I do have
good support around me I find these forums so supportive as we really
all are going through it together..like a family and we all no so many
of the range of emotions you go through comming to terms with being
diagonised.It's a scary time but please don't feel alone and if you want to talk pm me as am happy to chat...
Take care xxxx
Take care xxxx
14 Aug 2013 at 11:14PM
I'd really suggest you get those treatments as soon as possible, because it's going to get worse and worse.
And sorry, but I can't imagine how it feels being alone in this, I'm not young anymore :(
And sorry, but I can't imagine how it feels being alone in this, I'm not young anymore :(
22 Aug 2013 at 10:10AM
Hi
I was told i have CIS (Clinically isolated syndrome) at the start of June this year a month before i turned 23. I have recently got a wheel chair because i cant walk that far and im always feeling very unsteady as if im going to fall.
I have had some steroids and other things to help mainly for my bladder but as they don’t know if this is a once in a lifetime thing or if it will happen again (which will lead to a “proper” diagnosis of MS). I didn’t know anyone with this but i got in touch with my local branch of the MS society and they were so helpful, especially seeing as i had just moved away from the area where i was diagnosed.
I know its hard to explain to people how you feel and how frustrating it can be but please don’t feel alone. It may take time but people will start to understand and become more understanding about what you are going through.
I was told i have CIS (Clinically isolated syndrome) at the start of June this year a month before i turned 23. I have recently got a wheel chair because i cant walk that far and im always feeling very unsteady as if im going to fall.
I have had some steroids and other things to help mainly for my bladder but as they don’t know if this is a once in a lifetime thing or if it will happen again (which will lead to a “proper” diagnosis of MS). I didn’t know anyone with this but i got in touch with my local branch of the MS society and they were so helpful, especially seeing as i had just moved away from the area where i was diagnosed.
I know its hard to explain to people how you feel and how frustrating it can be but please don’t feel alone. It may take time but people will start to understand and become more understanding about what you are going through.
23 Aug 2013 at 7:57AM
Surfeinstain, I know you probably mean well, but saying
ellisamanda will get worse and worse is a bit scary for her and if i'm
honest me too.
Ellisa hun, I was diagnosed in january this year but symptoms started last july with foot drop and leg heaviness. It was a real whammy from nowhere. I have regained all movement and only have sensory issues with leg heaviness if I am having a long tiring day. My neuro (who recently retired was the top lead neuro at shampton) told me that I could relapse in a week, a month a year, 10 years or never! Hey one year on and no relapse. I started rebif in may this year.
Think positive hun. Ms is so different for everyone and in many cases it doesn't get worse and worse. My great aunt has it. She is in her 70's. She was dxd at 30. Still drives! Worked full time all her working life and only uses a stick - NO WHEELCHAIR. Take care hun. Think positive and pm me anytime xx
Ellisa hun, I was diagnosed in january this year but symptoms started last july with foot drop and leg heaviness. It was a real whammy from nowhere. I have regained all movement and only have sensory issues with leg heaviness if I am having a long tiring day. My neuro (who recently retired was the top lead neuro at shampton) told me that I could relapse in a week, a month a year, 10 years or never! Hey one year on and no relapse. I started rebif in may this year.
Think positive hun. Ms is so different for everyone and in many cases it doesn't get worse and worse. My great aunt has it. She is in her 70's. She was dxd at 30. Still drives! Worked full time all her working life and only uses a stick - NO WHEELCHAIR. Take care hun. Think positive and pm me anytime xx
23 Aug 2013 at 7:59AM
Surfeinstain, I know you probably mean well, but saying
ellisamanda will get worse and worse is a bit scary for her and if i'm
honest me too.
Ellisa hun, I was diagnosed in january this year but symptoms started last july with foot drop and leg heaviness. It was a real whammy from nowhere. I have regained all movement and only have sensory issues with leg heaviness if I am having a long tiring day. My neuro (who recently retired was the top lead neuro at shampton) told me that I could relapse in a week, a month a year, 10 years or never! Hey one year on and no relapse. I started rebif in may this year.
Think positive hun. Ms is so different for everyone and in many cases it doesn't get worse and worse. My great aunt has it. She is in her 70's. She was dxd at 30. Still drives! Worked full time all her working life and only uses a stick - NO WHEELCHAIR. Take care hun. Think positive and pm me anytime xx
Ellisa hun, I was diagnosed in january this year but symptoms started last july with foot drop and leg heaviness. It was a real whammy from nowhere. I have regained all movement and only have sensory issues with leg heaviness if I am having a long tiring day. My neuro (who recently retired was the top lead neuro at shampton) told me that I could relapse in a week, a month a year, 10 years or never! Hey one year on and no relapse. I started rebif in may this year.
Think positive hun. Ms is so different for everyone and in many cases it doesn't get worse and worse. My great aunt has it. She is in her 70's. She was dxd at 30. Still drives! Worked full time all her working life and only uses a stick - NO WHEELCHAIR. Take care hun. Think positive and pm me anytime xx
02 Sep 2013 at 12:32AM
hi ellisa
you really dont have to go through this alone.
go along to your nearest branch of the ms society, find out what's available there.
some do t'ai chi, yoga, pilates.
also find your nearest ms therapy centre, many of these do hyperbarric oxygen therapy as well as loads of other stuff
you'll meet lots of other people with ms of all age groups
carole x
you really dont have to go through this alone.
go along to your nearest branch of the ms society, find out what's available there.
some do t'ai chi, yoga, pilates.
also find your nearest ms therapy centre, many of these do hyperbarric oxygen therapy as well as loads of other stuff
you'll meet lots of other people with ms of all age groups
carole x
Hi ellisamanda
I'm far from young but I do understand the scared and feeling alone part. I'm now 48 but was diagnosed 4 years ago out of the blue just 3 months after my first symptoms.
At diagnosis I was suffering from a severe relapse which left me numb from the waist down and really struggling to walk. It took over six months to recover fully and I was scared my legs would never get better. I started on Rebif and also joined the MS Society and went along to local branch meetings as I really needed to meet others with MS. I also started chatting on this forum and then wished I had found it sooner as it would have helped me with the rollercoaster of emotions that comes with diagnosis and choosing a treatment.
I have just had 3.5 years of being in remarkably good health. I have been able to go for long walks along the beach with friends, had fabulous holidays, been out partying (not bad for an old girl eh?) and still worked 30 hours per week at the day job plus worked from home in the evenings. I've been to football matches in London, days out shopping, hen nights etc etc. In short - I'VE LIVED!!
If you had talked to me shortly after diagnosis I would never thought it was possible to do all those things with MS but it really is. I'm not saying that it has always been easy. I do have to have a little sleep now and then, I have to pace myself and rest more often than I did pre-MS. But life is still good.
If you want to read up on treatments then the msdecisions website is a good place to start. Then you can ask on the Everyday Living board as there are lots of us on the Disease Modifying Drugs (DMDs for short). We will tell you our experiences which may help you choose.
And, please ignore Surfenstein - this illness will not get worse and worse. MS is as individual as each person. I have met lots of people with MS including several who have had it for 30+ years and they are still very mobile, happy and active. However, as Lisa said, the current thinking is that the sooner you start on treatment, the better for the course of the illness. Exercise is also very beneficial especially toning and stretching exercises like yoga or pilates for instance, although any exercise that you enjoy will help you in the long term.
Stay healthy and happy hun.
Tracey xxx
I'm far from young but I do understand the scared and feeling alone part. I'm now 48 but was diagnosed 4 years ago out of the blue just 3 months after my first symptoms.
At diagnosis I was suffering from a severe relapse which left me numb from the waist down and really struggling to walk. It took over six months to recover fully and I was scared my legs would never get better. I started on Rebif and also joined the MS Society and went along to local branch meetings as I really needed to meet others with MS. I also started chatting on this forum and then wished I had found it sooner as it would have helped me with the rollercoaster of emotions that comes with diagnosis and choosing a treatment.
I have just had 3.5 years of being in remarkably good health. I have been able to go for long walks along the beach with friends, had fabulous holidays, been out partying (not bad for an old girl eh?) and still worked 30 hours per week at the day job plus worked from home in the evenings. I've been to football matches in London, days out shopping, hen nights etc etc. In short - I'VE LIVED!!
If you had talked to me shortly after diagnosis I would never thought it was possible to do all those things with MS but it really is. I'm not saying that it has always been easy. I do have to have a little sleep now and then, I have to pace myself and rest more often than I did pre-MS. But life is still good.
If you want to read up on treatments then the msdecisions website is a good place to start. Then you can ask on the Everyday Living board as there are lots of us on the Disease Modifying Drugs (DMDs for short). We will tell you our experiences which may help you choose.
And, please ignore Surfenstein - this illness will not get worse and worse. MS is as individual as each person. I have met lots of people with MS including several who have had it for 30+ years and they are still very mobile, happy and active. However, as Lisa said, the current thinking is that the sooner you start on treatment, the better for the course of the illness. Exercise is also very beneficial especially toning and stretching exercises like yoga or pilates for instance, although any exercise that you enjoy will help you in the long term.
Stay healthy and happy hun.
Tracey xxx
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