shaywood
11-15-2007, 07:09 PM
Hi I would like to hear from anyone who is over 30 but was diagnosed in their 20's. How are you now and how you have dealt with ms all these years and what exercises u do or meds u r on for the ms??? I am 26 and was diagnosed when I was 24. I just dont know anyone my age with ms and was wondering how everyone elses path with ms has beeen for them. I know this probably sounds stupide but it is just something that my brain is telling that I need to know about.
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tuckersmom
11-15-2007, 08:31 PM
Hello. I am 44 now. Wasn't officially diagnosed until 4.5 years ago. They believe it started in my early 20's. Back then they just kept saying it was mono then it was "chronic fatigue" then "ebstein barr". I was sick all the time with anything within 50 miles;). I continued to work full time, get married and live like anyone else. The big "break through" was when I woke up with my new constant companions of tingling, pins and needles, fatigue and major spasticity. Had mri's ...confirmed ms diagnosis and then fibromyalgia, the only true change is I don't work full time outside the home. I have a full time job here at home taking care of things here and I can rest when I need to. There are days when driving is not an option but there is always things to do here.
I love pilates. I use a pilates machine not the kind you just do on a mat. I have a treadmill and walk alot on days I can or as much as I can. I do not use the injectable medication. I take a multiple vitamin and vit. d supplement and get as much sun as possible in this state!
I live a very full life. Many, many people with MS and other autoimmune diseases do. The thing with these types of conditions is that they are all so "individual" and affect everyone differently. There are common symptoms but to what degree seems to be the biggest difference.
Hope this answers some questions.
Lisa:angel:
p.s. no such thing as stupid question! ask away!
I love pilates. I use a pilates machine not the kind you just do on a mat. I have a treadmill and walk alot on days I can or as much as I can. I do not use the injectable medication. I take a multiple vitamin and vit. d supplement and get as much sun as possible in this state!
I live a very full life. Many, many people with MS and other autoimmune diseases do. The thing with these types of conditions is that they are all so "individual" and affect everyone differently. There are common symptoms but to what degree seems to be the biggest difference.
Hope this answers some questions.
Lisa:angel:
p.s. no such thing as stupid question! ask away!
MSJayhawk
11-15-2007, 08:35 PM
I was diagnosed when I was 19. I am now 44. I never used meds. I watch my diet and get rest when I need it. I now have PPMS.
MSNik
11-15-2007, 09:42 PM
Hey Shaywood. Im sorry you are having issues dealing right now. We all go thru that. Im actually 40, and was dx just over a year ago, so I cant tell you what from my own standpoint....but I want you to know that my very good friend is now 32 and was dx at 25. She has been on Betaseron for 7 years. She does REALLY well on it. She, like me, has her good days and bad days as far as fatigue and pain go, but she works fulltime, has 3 children and a husband, and still manages to live a perfectly normal life. No one would ever know she has MS...
If wondering how your disease is going to progress is what has you freaked, that would be a normal thing to be concerned about. I worry about it myself; however tell us, are you on any MS Therapy drugs? Do you think you have progressed in the past 2 years? And, are you getting regular MRIs and seeing your Neuro regularly? If you THINK you are doing well, then keep doing what you are doing! Alot of this really is in the mind....you can control a certain aspect of it....however, doing everything you can still doesnt Guarantee anything, alot of it is out of our control.
Read all the posts here, look at all the amazing people who are coping with MS. Theres nothing that says your life is going to change in your 30s, 40s or beyond...heck, by then, they might have a cure! (we can hope, right?)
Big hugs to you.
Nikki
If wondering how your disease is going to progress is what has you freaked, that would be a normal thing to be concerned about. I worry about it myself; however tell us, are you on any MS Therapy drugs? Do you think you have progressed in the past 2 years? And, are you getting regular MRIs and seeing your Neuro regularly? If you THINK you are doing well, then keep doing what you are doing! Alot of this really is in the mind....you can control a certain aspect of it....however, doing everything you can still doesnt Guarantee anything, alot of it is out of our control.
Read all the posts here, look at all the amazing people who are coping with MS. Theres nothing that says your life is going to change in your 30s, 40s or beyond...heck, by then, they might have a cure! (we can hope, right?)
Big hugs to you.
Nikki
Snoopy61
11-16-2007, 07:48 AM
Hello Shaywood.
I am 46, dx'd at 25 but can take symptoms back to when I was a kid. I had already been married when I was dx'd we are now at year 26. We have 2 children (15 & 17). I have never used the DMDs. I do exercise, I use hand weights, Pilates Body bands, treadmill, and stretching. I also use a fair amount of supplements and I take a multi-vitamin.
The neuro that dx'd me told me to live my life as normal as possible and if I do nothing else, walk. I have tried to do both to the best of my ability.
At this time in my life I walk unassisted. I have a cane but it tends to collect dust in the trunk of my car. For the most part I "look too good" to have MS :rolleyes:
I am betting there are many in your age group who have MS (unfortunately). Your in the "average" age of diagnosis. Maybe your just not looking in the right places;)
I am 46, dx'd at 25 but can take symptoms back to when I was a kid. I had already been married when I was dx'd we are now at year 26. We have 2 children (15 & 17). I have never used the DMDs. I do exercise, I use hand weights, Pilates Body bands, treadmill, and stretching. I also use a fair amount of supplements and I take a multi-vitamin.
The neuro that dx'd me told me to live my life as normal as possible and if I do nothing else, walk. I have tried to do both to the best of my ability.
At this time in my life I walk unassisted. I have a cane but it tends to collect dust in the trunk of my car. For the most part I "look too good" to have MS :rolleyes:
I am betting there are many in your age group who have MS (unfortunately). Your in the "average" age of diagnosis. Maybe your just not looking in the right places;)
Hanksmom123
11-16-2007, 11:38 AM
Hi! I am 28 and was diagnosed in April. I am currently on Betaseron since May and haven't had any problems (knock on wood)!!!!!! I guess the way i look at is that although this royally stinks to have sometimes there is a lot worse things I could have. So I try to keep an up beat attitude. Don't get me wrong I cried my eyes out this summer when I felt like crap everyday because of the heat. My poor fiance heard I hate MS more than anything. But the fatigue has passed with the hot weather and I am feeling better.
I guess what I am rambling about is that MS is such a diverse disease that you can just hope you will be one of the lucky ones that does well for the rest of your life with it!!!!!!!!!!!!!!!!!!!!!!!! Good Luck
I guess what I am rambling about is that MS is such a diverse disease that you can just hope you will be one of the lucky ones that does well for the rest of your life with it!!!!!!!!!!!!!!!!!!!!!!!! Good Luck
sunshine149
11-16-2007, 12:32 PM
I was 23 when DX'd and I'm now 33. I do not taken any medications (CRAB drugs). I've had 2 major flare-ups since diagnosis, several minor flares but none as severe as the flare-up that brought on DX. I "treat" my MS with diet, exercise, massage, acupunture and chinese herbal therapies.
sharpaul01
11-17-2007, 01:21 AM
Hi ;)
dx at 26 now 35
Sharon :angel:
dx at 26 now 35
Sharon :angel:
shaywood
11-17-2007, 10:54 AM
Yes I have went to all my neuro appointments and I take avonex, lyrica, prozac and effexsor but I still feel depressed and stressed and tired all the time and tired of my muscles jumping and hurting and now my stupid bowels and bladder are wanting to act up. I have had 3 mri since diagnosis and I have had one more lesion since the ones at diagnosis. So I feel like i am an old lady i just wonder how i will feel 10 years from now. Thanks for all the kind words!!! Bless u all too!!!
helricha
11-17-2007, 07:27 PM
I only have to disagree with the comment about the shots given by sharpaul01. There has been a lot of documented research and trials that have gone into MS therapy. If it had not shown to slow the progression of the disease then the FDA would not have approved it. If the FDA is incorrect then we should all be terrified of anything we put into our bodies.
So it's true the shots don't work for everyone but they do for others and I think that it is important to be tolerant of that.
That's just my opinion.
So it's true the shots don't work for everyone but they do for others and I think that it is important to be tolerant of that.
That's just my opinion.
MSNik
11-17-2007, 11:07 PM
sorry folks. I wasnt addressing the correct concern so I deleted it.
AllyG
11-23-2007, 12:53 PM
Hi,
I am 30 & was diagnosed at 26. Was having a fairly bad relapse when diagnosed & spent 5/6 weeks in hosp. Once out, I started Rebif immediately.
MS rarely affects my life - I still go out like all my friends, I work 4days a week & I am in almost perfect health. I do have bad days where I'm a bit tired or shakey but I've learned to rest & eat well & this always passes (Thank God). I also get my flu shot every year & take plenty of vitamins etc. I make sure to keep away from people if they have a bug or cold & this all seems to work for me.
My aunt was diagnosed at 29 & is now 40. She's since had 2 lovely children & lives a full & happy life. Apart from tiredness, weak bladder & balance problems - she's in flying form. She also went on Rebif from the start & takes the same vitamins/evening primrose oil etc as me.
Hope this is of some help.
Ally
PS: We both have RRMS.
I am 30 & was diagnosed at 26. Was having a fairly bad relapse when diagnosed & spent 5/6 weeks in hosp. Once out, I started Rebif immediately.
MS rarely affects my life - I still go out like all my friends, I work 4days a week & I am in almost perfect health. I do have bad days where I'm a bit tired or shakey but I've learned to rest & eat well & this always passes (Thank God). I also get my flu shot every year & take plenty of vitamins etc. I make sure to keep away from people if they have a bug or cold & this all seems to work for me.
My aunt was diagnosed at 29 & is now 40. She's since had 2 lovely children & lives a full & happy life. Apart from tiredness, weak bladder & balance problems - she's in flying form. She also went on Rebif from the start & takes the same vitamins/evening primrose oil etc as me.
Hope this is of some help.
Ally
PS: We both have RRMS.