Age at time of Dx?

[maryloularonde]

GOOD MORNING TO ALL

I DONT THINK MS HAS A AGE SOME ONE SAID A 4 YR OLD WAS DIAGNOSED TO DAY I AM 69 AND SILL WAITING FOR A DIAGNOSE ONE MRI SHOWED 16 LEISONS THEY SAY IT MY AGE YEA RIGHT I HAVE HAD SYMPOMS FOR YRS 17 YRS AGO I HAD THE SAME THING THE DR I HAD THEN GAVE ME PREDISON FOR 10 DAYS THAT HELP A LOT THEN SLOWLY THING STARTED TO COME BACK NOW 17 YR LATER I CANT EVEN STAND LONG EOUGHT TO HAVE A SHOWER SOME TIMES I JUST FALL HAVE DOUBLE VISION SPASMS IN MY LEG MY RIGHT ARM IS SO SORE I CAN GET IT UP TO COME MY HAIR I JUST GOT IT ALL CUT OFF THE PAIN AT NIGHT IS AWFUL I MOAN IN MY SLEEP AND WAKE MY HUSBAND.HE HAS EVEN TOLD THE DR HE SENT ME TO A NEUR AND SAID I DONT HAVE MS I AM TO OLDI WELL WHAT DO I HAVE HE DOSENT KNOW.I I AM JUST ON PAIN PILLS AND MUSCLE RELAXENTS MEAN WELL I AM GETTIN WORSE I HAVE A VISIT WITH MY GP NEXT WEEK I GOING TO DEMAND TO SEE A MS DR. MARYLOU

[lemstar]

Its a funny question because diagnosis was much more difficult 30 years ago. I am 55, and was diagnosed at 53, but I know my first episode was when I was around 24. Symptoms were all sensory back then, and got mostly better over time. Docs suspected MS, but there was no treatment at the time, and I declined tons of testing. Then two years ago, I had another episode, and recognized it as the same thing that had happened before, only worse. MRIs confirmed the MS diagnosis, with black holes and lesions in my spine and brain.
So I was just diagnosed at 53, but that was only because they couldn't diagnose it with the same certainty back in the 80s.
In retrospect, I see lots of symptoms I had throughout the years, but just didn't recognize, like buzzing, and numbness, and tingling.

[SANDRAB]

I was wishing I was too young

I was wishing I was too young to be in Senior's Sanctuary, I guess not. I can dream can't I. LOL I was dx at 44 with RRMS. Now at 53 I have PPrMS. I recently started on Tysabri. My new neuro gave me that dx PPrMS so I can wish for Relapsing.
Sandra

[Scooter24]

53 at DX but had symptoms for 25 years that were wrote off to other things, foot drop when tired was dx as a problem related to my type 2 diabetes, would get better when I relaxed and had something to eat and drink. hand numbness wrote off to corpal tunnel but not bad enough to do surgery. etc etc and added to that I am not one to go to a Dr anyway unless half dead or forced to. I only went to nuero when I went to see my GP for a check up after chemo and radiation and he saw my foot drop and scheduled the appoint.
I am sure there are others that put off going to the dr until sx got bad.

[SarahIsSpecial055336]

DX

I'm 15 now and I just got diagnosed with MS..

[oso49]

gmahoney,

I'm 62 and don't yet have a dx. MRI showed 11 lesions, all other tests were "negative" for what was tested and I'm now waiting for the results of the LP (7 Sept 2011). However, looking back - and I mean many years - I remember bouts of dizzyness, extreme lower leg pain some cognitive issues. At that time, The Drs couldn't explain the reason for any of this. I've had numbness and burning in both feet for over seven years and my neuro has been treating this as a "lower back/pinched nerve" issue. It wasn't until I told him about my recurring dizzyness did I get tested for MS. After saying all this, please think back as far as you can and try to remember if you exerienced ANY MS-type symptoms along the way.

Hang in there and let us know what's up.

[mtnwillow]

Diagnosed at age 55 with MS. Was diagnosed in my 30's with fibromyalgia and chronic fatigue. I took the summer off, made some lifestyle changes and climbed back into the saddle. Now I wonder if the first episode was related? I now have PPMS.

[oso49]

"I READ SOMEWHERE THAT LATE DX MS TENDS TO BE MORE PROGRESSIVE, I HOPE THAT IS WRONG."

The above is from an earlier post in this thread. Does anyone know if any clincal evidence exists that validates the statement?

Thanks.

[jcrain9663]

"I READ SOMEWHERE THAT LATE DX MS TENDS TO BE MORE PROGRESSIVE, I HOPE THAT IS WRONG."

The above is from an earlier post in this thread. Does anyone know if any clinical evidence exists that validates the statement?

Thanks.

This paper tends to show that late-onset MS is indeed IN GENERAL more progressive:

The mean EDSS score at first neurologic
assessment was significantly higher
in the late-onset group (3.5) than in the
young-onset group (2.8). By the time of
the last neurologic examination, mean
EDSS score was 6.5 compared with 3.9
(P=0.001), respectively (progression index
0.60 vs 0.35, respectively).
As expected, a relapsing-remitting
course was much more frequent in the
young-onset patients (94%) than in the
late-onset patients (8%; P<0.001),
whereas a primary-progressive course
was much more frequent in the late-onset
group (83% vs 5%; P<0.001).

Characteristics of Late-Onset MS
Kis B, Rumberg B, Berlit P. Clinical characteristics of patients with late-onset multiple sclerosis. J Neurol.
2008;255:697-702.

I noticed they also mentioned that in older-onset patients, the time to diagnosis was prolonged as patients were misdiagnosed more frequently.

[llevey]

How many of us late onset folk are on disease modifying therapy?

Hi everyone,

I was diagnosed in 2001 when I was 55 years old. I had optic neuritis and an MRI consonant with MS. I went on Avonex right away, then Rebif when it was approved in the US. I've been on Gillenya since March and doing very well.

I've read some of the studies on the ramifications of late onset MS. I think that they may be a little skewed because they are studying a cohort of patients that have not necessarily had the benefit of disease modifying therapies beginning at diagnosis.

I know that in my case, it's been 10 1/2 years since diagnosis. Although there's been slight progression, there hasn't been much. So I have three questions--how are you doing? How many of us are on one of the disease modifying therapies...and for how long? I'm as scared of possible ramifications of late onset MS as everyone else, but I think that there have to be more longitudinal studies that take medication into consideration.

Regards Liz

[wkikta]

I was Diagnosed at 47, but first signs were at 42. But it went away so I just got on with my life. 58 now and if you read my signature you can see what I did between first signs and diagnosis.

[mtnwillow]

I was diagnosed at age 55, less than a year ago. I use a walker on occasion. My major problems seem to be cognition, nausea and pain. My gross moter skills are intact but fine motor skills have suffered. Writing with a pen is painful and near unreadable. i'm due a MRI on Friday, so will know if my deterioration is lesion oriented.
Summer was very difficult for me and I'm glad to see the cooler temperatures as heat totally melts my strength.

[ireneg]

Mis-DX--incompetent radiologist

I was diagnosed one month before my 66th birthday, two years ago. In retrospect, I had symptoms for about 10 years prior to diagnosis. I kept asking doctors about the constant pain in my thighs. No one could figure it out. I saw a neurologist who thought I walked like a 65 year old with arthritis in my back. He ordered an MRI. The radiologist report said that I had lesions typical for a person of my age with high blood pressure. He missed the Dawson's Fingers. The neurologist did not look at the MRI, although he told me he planned to do so. My daughter was concerned about my gait and my balance and she dragged me to the Mayo Clinic. Two weeks later, I received the diagnosis of MS. I think it is important to see doctors who specialize in MS. When I talked to my friendly neighborhood neurologist after receiving the diagnosis, he became visibly upset. First he denied that the report said that I had MS and then said that it was difficult to ascertain from an MRI. Looking at the MRI on an office computer proved him wrong. When he asked me about starting treatment, I told him I was going to an MS Institute. His parting words were, "I have never diagnosed anyone over 60." He told the office staff not to charge me for the office call.

[standingstrong]

This thread, very informative!

I'm new here, as of right now, and this is only my second post. I am 74 years old, but have had falling-down problems all my life.

About four years or so ago, I had one severe fall which never resolved itself. Each doctor I saw about it gave me a different dx.

This year my internist first referred me to a neurosurgeon. All together, between all the MDs, I've had several MRI's.

Then the internist referred me to a neurologist who also did an MRI, my 6th, but this time also with an MRA, and with much better high-tech equipment than my local hospital has. That same day because of travel distance, he also did an EMG and a nerve-conduction test.

Before all of the above, he also ordered a couple of blood tests, one which he called an Ataxia panel.

Last Tuesday, he, himself, did a spinal tap. Now the results on that won't be back for four weeks so next appt. is December 20.

In the meanwhile, he wrote a prescription for me for a power chair, which should be arriving within the next 1-4 weeks. Hallelujah!

Do I have MS, don't know for sure, but I suspect as much, since I've looked up most of what he filled out on the papers he gave me with the prescription.

My balance has tanked, white matter yes (probably aging he says), something or other with the interior of my brain (colosum?), numbness left leg when standing, inability to stand more than 2-3 minutes, near falls even on the walker, muscle jerks, incontinence, double vision without glasses but only with printed words, and a whole lot of pain.

But, spiritually? I'm standingstrong!

[phxjcc]

WM, 60 Y.O.
DX'd at 53 after paresthesia on rt side, head-to-toe.
DX'd due to CSF proteins, brain and SC lesions, and optic nerve issues and bi-lateral strength test showed decay of strength on rt side.

Double vision at 48, [mis] Dx'd as a TIA (stroke).

Been falling all my life...like since 5 years old, fell off the back porch and did a face plant on concrete driveway. Had what I am sure now was an exacerbation at 17, that my Marcus Welby-type Dr diagnosed as the flu. Was in bed for 3 weeks. Severe aches & pains for years after I played tennis in my 20's.

Was always active physically, "go outside and play" was my parents' mantra.

My neuro thinks that I have had it all my life--best question ever from a Dr....."Where you always picked last in PE class to be on a team?". AAMOF, the answer is "YES!"

Could never run even medium distances (eg, 500 yds), nor develop endurance no matter how hard I trained. Ditto, bike riding and swimming. Built myself up to be strong as an ox due to weight training, but aerobic conditioning? Fuhgettaboutit.

You asked, so there you go. That's me.

Hope this helps someone newly Dx'd.