M.S. family: What is the median age for m... - My MSAA Community

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M.S. family

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What is the median age for m.s. I have also relized as worriers we handle m.s. better than my family STRANGE isnt it

47 Replies
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When it comes to age, ms doesn’t discriminate, ms is most commonly diagnosed to persons between 20 and 50, according to google. I was diagnosed at 54, 10 years ago but they said that I had probably had it for at least 25 years. 😊

Hidden
Hidden in reply to jimeka

No it doesnt I have had mine from about 10 I'm now 52 next month I had chicken pox in left eye which is now shingles since that time

Well, I don't know of a "median age" but I do think the age range is about "20-40" for initial dx (but things are constantly changing). With newer MRIs, etc., folks tend to get dx earlier presently?

FWIW, I was dx at age 25 in 1994 (when Betaseron was on a lottery) and was told "young women tend to do very well with MS & that we would wait and see" fast forward three years later in 1997 a follow-up MRI showed substantial "silent" progression. I was told to start Avonex asap. Yikes!

Fortunately, much has advanced with MS care/dx/tx, etc. But, still no cure or known cause, but we are all "better" with years of research & funding. #Blessed :)

Hidden
Hidden in reply to DM0329

They say having the shingles virus is what laid the path for mine

ahrogers
ahrogers in reply to Hidden

Interesting, I got chicken pox a second time as an adult at age 36 but didn't get MS symptoms until I was 44 and was diagnosed when I was 45. However, when diagnosed I had a lot of lesions; more than 10 in the brain and several in thoracic and cervical cord. Maybe after the chicken pox it started attacking my myelin but took 8 years to cause enough damage to have symptoms. I guess there is no way to know for sure and it won't matter to me but may help prevention in the future. They have been giving the chicken pox vaccine routinely for a while now. My son was vaccinated but he still got chicken pox when he was 6 which is when I got it again.

I bet with the new diagnostic criteria people will be diagnosed sooner and the median age will drop.

I am just glad so much research is being done and so many new treatments are available. Would love to see a treatment that gets the body to remyelinate before I become too disabled to work.

Keep up the good fight!!

hairbrain4
hairbrain4 in reply to ahrogers

I had a severe case of chicken pox at 13 or 14. My first neuro said it probably was the forefront to my MS & probably had it 25+ years before diagnosis in 2005 when I was 50.

ahrogers
ahrogers in reply to hairbrain4

Funny how everything I read talks about the Epstein Barr virus and not the chicken pox virus (varicella) as a link to MS

Hidden
Hidden in reply to ahrogers

they have made a link with viruses and m.s.

Jesmcd2
Jesmcd2CommunityAmbassador

This is just a part of what MSAA has to say...

Most people with MS experience their first symptoms and are diagnosed between the ages of 15 and 50, although individuals of any age may be diagnosed with MS. More women are diagnosed with MS than men, and the area where someone lives, as well as race and ethnic background, also helps to determine his or her risk of developing the disease.

You can read more here... mymsaa.org/ms-information/o...

I was dxd at 49, I never asked for how long or anything. I was in shock I had it. And how soon could they cut it out of me!🤣😭🤣🤗💕🌠

Hidden
Hidden in reply to Jesmcd2

Yea it kind of hits yea when u get dx thanks

Hidden
Hidden in reply to Jesmcd2

I appreciate your input it really helps hearing from other m.s. family thank you much if I havent said it lately does anyone know what the average ave you live to be just curious

ahrogers
ahrogers in reply to Hidden

I looked that up when first diagnosed back in 2014 so it may be different now. Back then it said people with MS tend to live into their 70s and estimate a minor impact on life span. It's just that you are living with disabilities.

Bwine
Bwine in reply to Hidden

I have read that MS doesn’t really affect your life expectancy any more than if you didn’t have MS. For some it’s different of course because everyone’s case is different. I have also read that maybe 7-10 years sooner than without MS. I saw somebody on here commented that it gets you in your 70’s and I sure hope that’s not true!

Hidden
Hidden in reply to Bwine

I think lifestyle has alot to do with it

Hidden
Hidden in reply to Jesmcd2

In my older reply I said thanks wanted to make myself clear thanks for the link

Jesmcd2
Jesmcd2CommunityAmbassador in reply to Hidden

Very Welcome! 🤗💕🌠

I was diagnosed at the age of 46. But I think I had it year before I was diagnosed. I just didn't know what was going on. I also believe that it is genetic. I have 3 cousins that have MS on my mother's side and my mother's sister had it.

Hidden
Hidden in reply to Cutefreckles72

I have an uncle with m.s. and they used to say it wasnt genetic I believe in it is

I'm the only one in my family with MS. No one before me & so far, no one after me.

It took 3 years for me to be diagnosed at the age of 56! I was on Copaxone for 12 years. There were only 3 DMTs available at the time.

Hidden
Hidden in reply to BigMar7

I was on copaxone for 3 yrs after newly dx on aubagio now had to go on different mg from 14 mg to 7 mg now

Hidden
Hidden in reply to BigMar7

I was on copaxone when u had to mix the vials of medicine before injection

Hidden
Hidden

I was on copaxone for about three years back when you had to mix the viles before injection wow look at things now theres a good reason to believe in a cure

i was 58 when diagnosed but i had it at least 10 years prior

Hidden
Hidden in reply to pamgarner

Everything made since when I was diagnosed the questions i had were all answered and a sigh of relief 🤪😊

I was 32 when I was diagnosed in 1981 ( by a spinal tap) with RRMS, and there were no DMT's available. I had 2 first cousins, both male, both mid 30's who were dx with PPMS within 2 years after I was. Both on my Dad's

side. I had an MRI sometime in the mid 80's, when they became available,

that showed multiple lesions, in my brain, brain stem, and spine. I'm 72 now, not dead yet, although both my cousins are. My MS has been SPMS

for several years now, and is very different from the original. I read one article that stated that people with MS had the same life expectancy as those without the disease, it just feels longer because we have so much to deal with! I'll take every day I get! Linda

pamgarner
pamgarner in reply to leking1

i am with you:)

Hidden
Hidden in reply to leking1

M.s. seems to do better when you take good care of yourself by keeping everything else in order other illnesses and stuff

leking1
leking1 in reply to Hidden

Yes, it does. Stay as active as you can, and do what you really enjoy!

Hidden
Hidden in reply to leking1

I have rrms

I was Dx at age 34. Had Lyme disease before that. My doctors say the Lyme has nothing to do with it, but I don't believe them.

It's really scary how most MS doctors don't care about the cause of MS. Just know about the different DMTs and that's really it. For example, I have PPMS and get a flair anytime my vitamin d3 drops under 40. Like automatic every time. I now test D3 every 2 months to keep it 80-150 and supplement heavily depending on the time of year. Took my first MS doctor years to admit a connection even though I could show him D3 tests that correlated to my exacerbations. I don't see that doctor anymore.

I view it as they are MY doctor, I'm not their patient. I can fire him/her instantly and they better work for their money. If a doctor only talks DMTs they are closed minded and/or getting kickbacks and I'm gone....every reaction in this world has a cause. Even if it's genetic, which I'm sure that's a big part of it, WHATS TRIGGERING IT?!?!?

Sorry, just really pisses me off! Sit over here and take your DMTs with usually crap side effects and be a good little boy. Not good enough for me!

I'm not saying DMTs don't help.

pamgarner
pamgarner in reply to palomino27

I hear you,again I think dr's try to give us information that will satisfy us,so much of it is patient heal thyself,i understand there is many treatments out there,i just feel like a fish flopping around on ground,what to do ,what to do?

Hidden
Hidden in reply to pamgarner

My m.d. doc is also a researcher hes great

Hidden
Hidden in reply to palomino27

Good observation I think you made a great find if helps manage diease

dx. at 23. had just graduated from college and my father had died. i move for my first job, have a headache that doesn't go away and all of a sudden i'm dg. with ms. am 42 now.

I was 22 years old when I was diagnosed. I will be 47 in eight days. About five years into my diagnosis I started on Avonex and I took that for years until I was switched to Rebif. I have remained on Rebif since 2013.

I was diagnosed at 46, after complaining about symptoms for 10 years, Hidden . I also had chickenpox as a child. Didn't we all? :-D

Hidden
Hidden in reply to carolek572

Yes they said it damaged my immune system

Hidden
Hidden in reply to Hidden

Dont know if because it was in my eye where it settled lost eyesight at 10 when the virus became active again

carolek572
carolek572 in reply to Hidden

I always had an overactive immune system by the fact that I always had an extremely high white blood cell count. I wonder if that was a harbinger of things to come for me ~ health wise? :-D

Hidden
Hidden in reply to carolek572

Things are overactive with my m.s.

carolek572
carolek572 in reply to Hidden

I was diagnosed with PP'ms', so it doesn't present itself so 'actively' but it is rather a slow steady decline. I make the most of what I currently can do. And you, Hidden ? I am sending you gentle vHugs and vSmiles, always :-D

I firmly believe stress has tons to do with coming down with ms,i have lots of auto immune disease in my family but not ms,different stuff.i would be curious who carried a high stress level for years before diagnosis.you can only carry a stress level that high and not have issues.

Hidden
Hidden in reply to pamgarner

I know stress aggravates m.s.

Bwine
Bwine in reply to pamgarner

Pam, I had MAJOR anxiety as a child. No one has ever told me that it could be the cause, or even related, but I was a worrier. From a very young age I worried about things a kid should have no concern about. My sisters didn’t do it, though, and no one else in my entire family has MS other than me.

Hidden
Hidden

Haven thought bout stress being the cause of m.s.

Jesmcd2
Jesmcd2CommunityAmbassador in reply to Hidden

Stress doesn't cause MS, but it can make it worse. As in a relaspe. Stress can do Alot of damage to a body unfortunately. But with someone with MS it's best not to be stressed! 🤗💕🌠

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