Young and Newly Diagnosed
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Young and Newly Diagnosed
31 Aug 2013 at 6:07PM
I found this forum through google. I am 22 and just received
my diagnosis of MS two weeks ago. I am only on steroids for now. I meet
with my neuro again Sept. 12 to hopefully start treatment with DMDs. I
have had symptoms of tingling in both my legs, loss of coordination and
balance, and my right dominant arm is having major problems writing and
typing. I am most scared I am not going to get better. I just started PT
last week and I cannot even do simple tasks. Everyone has told me
things will get better but I am afraif they will not. I guess I am
writing to find people who have learned how to deal with this disease.
It is very overwhelming and I am just scared that I will be this was for
the next 50 years of my life.
02 Sep 2013 at 12:21AM
hi vanis
two weeks is absolutely not long enough to get your head around this diagnosis.
i got my dx in 2008 and i'm far too old for this board but i needed a change.
don't worry so much and don't try to second guess what this B$%& is going to do next.
it is amazing how our bodies adapt.
have you been allocated a ms nurse?
when i met my specialist for dmds my ms nurse was there and she talked to me about my symptoms,
she then referred me to occupational therapy (brilliant, i got grab rails fitted in my shower)
physiotherapy (excellent, she told me that my posture was all wrong)
continence nurse (life saver because my bladder was ruling my life)
i know it must seem very unfair for you having all this at such a young age but the very fact that you are young will mean that you learn faster. the best bit of advice i had during the first year was my physio said "you have to learn how to operate this new body".
take care, plan a treat a week
carole x
two weeks is absolutely not long enough to get your head around this diagnosis.
i got my dx in 2008 and i'm far too old for this board but i needed a change.
don't worry so much and don't try to second guess what this B$%& is going to do next.
it is amazing how our bodies adapt.
have you been allocated a ms nurse?
when i met my specialist for dmds my ms nurse was there and she talked to me about my symptoms,
she then referred me to occupational therapy (brilliant, i got grab rails fitted in my shower)
physiotherapy (excellent, she told me that my posture was all wrong)
continence nurse (life saver because my bladder was ruling my life)
i know it must seem very unfair for you having all this at such a young age but the very fact that you are young will mean that you learn faster. the best bit of advice i had during the first year was my physio said "you have to learn how to operate this new body".
take care, plan a treat a week
carole x
Hi Vanis1
I'm also much too old for this board but thought I'd look in and I don't like to leave someone with very few replies.
I'm 48 now but was diagnosed at 44 completely out of the blue just 3 months after my first symptoms. It was a huge shock and, like you, I was scared things weren't going to get any better for me. At the time I was struggling to walk and it took about 6 months for my walking to return to normal.
I started on Rebif later that year and I have just had three and a half really good years of a really active lifestyle. I still work 30 hours pw at my day job and I also work from home in the evenings. I have a full social life, I go to hen nights, parties, football matches, holidays etc etc. The only real difference is that I tire more easily so I have to plan rest periods or a little sleep if possible during the day but I don't let it stop me.
Regarding treatments, the best place to start is the msdecisions website. I used it to choose which DMD I thought would fit into my life better. You could also try asking for opinions on the Everyday Living board as there are lots of us there who are on DMDs and we can share our experiences with you which may help you to make a choice.
Personallly, 4 years ago. I really needed to speak to someone with MS as I didn't know anyone so I joined my local branch of the MS Society and I found it very helpful. I like to join in with the social events and just know that they are the people who really understand what I am dealing with. As much as my friends and family try to understand, they will never really 'get it'. I also joined the forum here and then wished I had done so sooner as I had gone through the diagnosis and choosing a DMD rollercoaster all on my own.
Good luck in making that decision and remember that if one DMD doesn't work out for you, there is always the option to change.
Keep chatting to the good folks on here - I find it really helpful to share the good, bad and the ugly (oops I forgot - you're probably way to young to understand the reference to that film lol)
Tracey xx
I'm also much too old for this board but thought I'd look in and I don't like to leave someone with very few replies.
I'm 48 now but was diagnosed at 44 completely out of the blue just 3 months after my first symptoms. It was a huge shock and, like you, I was scared things weren't going to get any better for me. At the time I was struggling to walk and it took about 6 months for my walking to return to normal.
I started on Rebif later that year and I have just had three and a half really good years of a really active lifestyle. I still work 30 hours pw at my day job and I also work from home in the evenings. I have a full social life, I go to hen nights, parties, football matches, holidays etc etc. The only real difference is that I tire more easily so I have to plan rest periods or a little sleep if possible during the day but I don't let it stop me.
Regarding treatments, the best place to start is the msdecisions website. I used it to choose which DMD I thought would fit into my life better. You could also try asking for opinions on the Everyday Living board as there are lots of us there who are on DMDs and we can share our experiences with you which may help you to make a choice.
Personallly, 4 years ago. I really needed to speak to someone with MS as I didn't know anyone so I joined my local branch of the MS Society and I found it very helpful. I like to join in with the social events and just know that they are the people who really understand what I am dealing with. As much as my friends and family try to understand, they will never really 'get it'. I also joined the forum here and then wished I had done so sooner as I had gone through the diagnosis and choosing a DMD rollercoaster all on my own.
Good luck in making that decision and remember that if one DMD doesn't work out for you, there is always the option to change.
Keep chatting to the good folks on here - I find it really helpful to share the good, bad and the ugly (oops I forgot - you're probably way to young to understand the reference to that film lol)
Tracey xx
04 Sep 2013 at 3:05AM
Thank you for the responses. I'm still scared everyday that
I'm just gonna end up permanently disabled with my hand. With the
weakness and not really being able to type or write makes me think that
I'll never be able to enter the business world like I want to. I want to
hope this is the worst it is ever gonna get but I just don't know. Do
you know or have you heard of anyone who can't function right after
their first attack?
It's still early days and you have lots of time to improve.
Keep exercising your hand and trying to type/write as it will help the
brain to reconnect with the nerves. Good luck
Tracey x
Tracey x
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