Age at time of diagnosis

Question

Hi there everyone......  I hope you are all surviving the heat over in the USA.   We are still in wInter here in Sydney, Australia and have been having abnormlly high temperatures for this time of the year.as well..... I'm getting a little nervous about what temperatures we may get in our summer.  

My question is about the age of diagnosis of MS.   I am presently undergoing investigations and I have just last week turned 60.    I know this age is way above the usual age of diagnosis and was wondering if there have been others diagnosed so late.    I have been investigated for this back in 2006/8 and again now.   I have had many many years of symptoms and unsuccessful investigations without ever being given a diagnosis.  I have brain lesions on MRI but will be having a FLAIR MRI on Monday for more clarity, as well as EEG, balance and audiology testing in hospital in a few weeks time.   

I have electric shock type sensations in my neck and head, and myoclonic jerking in my abdomen and diaphragm, mainly of a night but occasionally of a daytime.  Sometimes this jerking extends to my toes and can be quite violent waking both myself and husband.  I have a feeling in one foot like I have something stuck in behind my toes and I can't stretch or bend my toes on that foot.    I sometimes lose balance when standing still.   

I have been referred to an ophthalmological neurologist but do not see him for one month.   I have a problem in one eye (discomfort and blurriness) which continues since an episode of momentary loss of sight a couple of months ago.  

Now back to the actual question........is there anyone else on this forum who may have been diagnosed at a similar age?    My first visit with a neurologist was in 2000 when I was 48 but have had other problems prior to that time. 


Thanks   P

Deb61 · Accepted Answer

This would be interesting as a poll or quick response from people and get a tally as to their age at diagnosis.  I know there are others on the forum diagnosed around your age.  I could have easily have gotten to 60 (if I didn't have a good neuro), but I was 46 at the time of my diagnosis.  I too, had symptoms for years before this and can relate to what you have been through.  

Yes, it is smokin' hot here in the U.S.--especially down south.  I think yesterday's high was 109 F degrees (42.78 C), but it could have been higher.  

Deb

angela5674 · Answer

I guess I'm feeling a bit young too!  

I was officially diagnosed at age 30 (November 2007).  Just turned 34 yesterday.  

Angela

tammy197238 · Answer

38

nancihelp373 · Answer

Hi,
  I am going thru the waiting game right now myself. I have seen a neuro quite a few times and then took a break as i almost thought i was crazy. Another spell came around and i continued to search for the answer. Long story short my neuro did say that it was MS an am now seeking a second opinion . Almost starting from the beginning again.

 To answer your question, I am 57 and I have been really dealing with symptoms since 1998 . Just because you may be diagnosed at 60 does not mean it began at 60. You may have  had symptoms at a much earlier age.

Good luck to you and I hope you get answers sooner than some of us have. This is a GREAT forum with many people that have valuable insight and information. 

Nanci

nancihelp373 · Answer

Hi,
  I am going thru the waiting game right now myself. I have seen a neuro quite a few times and then took a break as i almost thought i was crazy. Another spell came around and i continued to search for the answer. Long story short my neuro did say that it was MS an am now seeking a second opinion . Almost starting from the beginning again.

 To answer your question, I am 57 and I have been really dealing with symptoms since 1998 . Just because you may be diagnosed at 60 does not mean it began at 60. You may have  had symptoms at a much earlier age.

Good luck to you and I hope you get answers sooner than some of us have. This is a GREAT forum with many people that have valuable insight and information. 

Nanci

aussiepixie · Answer

Thanks for everyone commenting on this post.   I kept telling myself that I couldn't have gotten to this age without a diagnosis but I can now see how this can happen.   I feel quite sure now that the first time I saw a neuro in early 2000 with this abdominal myoclonic jerking was an indication that something was going on.   I looked back on the doctors reports and he mentions the MRI then as not showing any demylienation so he was looking at MS then.   I have since had two more episodes lasting several weeks of this as well as several problems with my eyes.    This time my eye problem has lasted several months and I have the MRI showing lesions.    I will let you all know how I get on after my FLAIR MRI tomorrow.   


Thanks again for responding to my post.   
P

TAVL · Answer

I was dx @ 43 six mos after first symptom of optic neuritis. Started copaxone immediately and so far so good no flares. 

Tracey

nate79 · Answer

I am a male and was dx earlier this year at 31.  Im feeling a little young here.

HVAC · Answer

I was 46 when diagnosed. They knew I had brain damage in the brain stem in 1965. In 1965 or 1968, or 1975 they did not have MRIs and did not know kids got MS so they called it brain damage. If I was born in the last few years I would have been diagnosed with pediatric MS.

Alex

Lulu54 · Answer

wow, I'm feeling like I was young after reading this - I was dx'd at 54.  :-)

Good luck with the next round of tests. I hope the doctors find some answers for you.

Lulu

MsmsinFl · Answer

Female -- diagnosed at age 59.
  
Based on one-sided sensory issue & MRI.  

Treated successfully with IVSM & now Rebif 22mcg.

Never had symptoms before.

I'm pretty sure there was a poll on this a year or so ago...

grannyhotwheels · Answer

I started having symptoms at the age of 29... I could have had some before that but 29 is when I noticed things where not quite right... I was 43 when I was diagnosed... My PCP actually diagnosed me at the age of 38 but he wouldn't write it down until a Neuro did...

Carol

Mike_Shuswap · Answer

I'm a male, dx'd 1 1/2 years ago at age 53.

Mike

essdipity · Answer

Hey there. I'm another oldie who had symptoms for years before diagnosis at age---are you ready?--- 64.

My neuro before the present one told me people have been diagnosed way older than that. A big issue is misdiagnosis or usually no diagnosis, because abnormal MRIs are attributed to age, basically. Wrong!

There are quite a few others here who got their label at 55-65 (or even more), so don't feel alone.

ess

aussiepixie · Answer

Thanks for the answer.......

I also had every excuse for putting up with the symptoms.  The doctors always made me feel like a hypochondriac and blamed my bad spine (have now had surgery) for all my symptoms.   The doctor now has told me that he is trying to exclude MS.   He said the tests that he has ordered with give me an answer.   So I now just wait to get these tests done.    Thanks again......

Sumanadevii · Answer

Yep.  I was 60 at dx.  Like you years with symtoms but not seeking answers...I always had an excuse for them...Like work, large family, etc.  It was at age 50 I began to try getting help and took ten damn years for an answer.

Age at time of diagnosis

Would love tips to enable me to walk 2 small dogs despite spasticity & walker.

Please help, I’m miserable and really just lost.

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Would love tips to enable me to walk 2 small dogs despite spasticity & walker.

Please help, I’m miserable and really just lost.

Undiagnosed

Any mother and daughter pairs that both have MS?

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