Late Onset MS

[TomD]

Hi Everyone,
Have any of you heard about late onset MS? From what I see it seems to befall people in their 50's and older. There MRI's are usually unremarkable etc... Any takers?
Tom


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[Seasha]

Hi Tom - there has been some discussion about late onset MS (LOM) here in the past. Here are a couple threads to read: If you do a search you will find more.

http://www.msworld.org/forum/showthr...-Late-Onset-MS

http://www.msworld.org/forum/showthr...rogress-faster

I don't have the time to read all of the posts, but hopefully you'll gleam some information.

I was dx at age 50, but going back over my medical history, I had my first sx at around age 39.

[ru4cats]

I am definitely a "late onset" for MS. I was diagnosed at 58 1/2, and I only had symptoms for the 18 previous months. My neurologist said I might have been subclinical in the early years, but if so, it was subclinical with absolutely no symptoms. Late onset leads to earlier movement to SPMS since there are no brain reserves available to accomplish "work arounds" in the nervous system. However, I've found my late diagnosis doesn't mean a more severe course of MS, just a quicker movement to SPMS.

[MarkLavelle]

I don't know if "LOM" is a widely recognized dx, but I would definitely fit in: my first sx came at age 55.

I've seen claims both ways (faster & slower SPMS onset, or increases in EDSS), but I don't remember seeing anything with data to back it up.

Even if good data exists, it can only talk about groups (e.g., "dx after 50"), and I am not a group! With something as random as MS progress, knowing average effects is pretty useless for predicting what will happen to any specific individual.

[loopey]

My Doctor Didn't Believe it

I was 65 when dx and my doctor didn't believe it. He said, "I would say MS except for your age". I had had 3 brain MRIs before dx with lesions clearly showing. He did a spinal MRI and found one on my spine and with all the symptoms finally confirmed the MS. I am sure I had it for at least 15 years before he diagnosed me.

I am worried that onset MS has been known to turn into Secondary Progressive but I am not allowing myself to worry about what MIGHT happen. I have enough to worry about with my daily symptoms right now. I have symptoms for over 3 years without remittance. I also have no new lesions since starting Aubagio 2 years ago and that is a concern (since I feel like I am getting worse) but like I said, it is sometimes a battle just to deal with today.

[betterme]

Hi Tom. I was diagnosed in 2011 at the ripe old age of 48. It was very sudden after 48 years of apparent good health. I started having foot drops that May and saw my doctor. She referred me to a neurologist but within 3 weeks and before he could schedule an mri I started falling all over the place and went to the emergency room. I was diagnosed with ms after the mri was done at the hospital. There were so many legions in my brain and spine that it was a "no brainer". I was told that I had the disease for many years so I consider myself lucky that I had raised my son by then. Looking back with my doctors, I believe that I had symptoms that went away quickly so I did nothing about them. I guess I had a 20 year remission before I went right to a diagnosis of spms.

[J-Bo]

Dx at 57 here, but started noticing something was wrong off and on around my early 40s. There are lots of us, aren't there?

[TinaP303]

Dx at 52, my neuro was surprised because of my age and how mild my symptoms are (knocking on wood now). I didn't believe it until I had a new MRI 3 yrs later that showed new lesions - the timing was too "coincidental" with all the "unexplainable" exhaustion I suddenly was dealing with.
Started Aubagio then.

[Diamond57]

Diagnosed this past May at 57. They believe I've had over 23 years when diagnosed in Mayo Clinic with Fibromyalgia in 1994.

Susie Q.

[barba]

late onset ms

Hey Tom. Dx age 60 when lumbar puncture finally confirmed symptoms as all brain scans inconclusive. PPMS and slow but steady decline since then. Would love to hear if any other "oldies" dx. PPMS and if anyone has found anything to slow this puppy down.

[suenan]

I was diagnosed two months before my 60th birthday, after a year-long search for reasons of balance problems. Dx came after an MRI and confirmed with a lumbar puncture. Most neuros say its probably been "stewing" for years, but the only symptom I can recall is some heat intolerance. So...is this late onset? Depends on who you ask I suppose.

[Beach Betty]

Late DX more likely

My dx was made at 55 when my vision went (optic neuritis) and an ophthalmologist sent me for a MRI, which then got me to a neurologist who was quite familiar with MS. However, once I was diagnosed and learned about MS and its many symptoms, which I knew absolutely nothing prior to that, I then knew that I had MS for at least 8-10 years before.

In fact, I remember complaining to my doctor 8 years before dx that I was experiencing burning sensations in my head and limbs and was stumbling a lot. That doc sent me to Vanderbilt University (I was living in Tennessee at the time), where a neurologist stuck needles in my arms and legs and came up with no dx. The doctor told me that "as we get older, we get more aches and pains". So for all the years after that, I never again complained to any doctor and stumbled on.

It was at 55 in 2005, when my vision went, which really scared me because I needed to read for my job, that finally, a MRI was ordered. Several more MRIs and a spinal tap came after that, and a knowledgeable neuro doc helped me. I remember reading an article on MS and neurology docs while in the doc's waiting room and learning that not all neurologists are familiar with MS. So, I felt so very lucky that at last, unknowingly, I got to the right doctor!

So, actually I don't think it is "late onset", but rather "late diagnosis", at least in my case.
In any event, to actually be diagnosed, at whatever age, as to all the crazy and often hurtful symptoms that we MSers experience, is a beginning of real help--with the right doctor!

[aisunnen]

Dx at 58+

Actually, I self-diagnosed in 2003 by seeing a yoga friend (already diagnosed) who presented the same kinds of symptoms I was starting to have, like foot drop, reduced balance, clumsiness. My internist pooh-poohed the idea because "I was already too old to get MS." Guess what?! I insisted and was lucky enough to see a great neuro at USC Medical Center. Pretty soon I had the confirmation and started with steroid treatments and Rebif. Still on Rebif, although no matter what, the co-pays are still growing and punishing. So far, I'm still walking, so I feel lucky compared with the sx I read about here. Crossed fingers it keeps on with a slow progression!

[cessna182d]

When I was 23 back in 1983 I got optical neuritis. Between then and 2010 I had no other issues.In 2010 I was feeling unsteady, went to a Neurologist, had an MRI and he said at the age of 50 I have MS. So I guess I must have had it since 1983 some 27 years, having no other issues. Now in the last 4-5 years I have walking difficulty, numb fingers, foggy, unable to ejaculate and the list goes on

[TomD]

Thanks For Your Comments On Late Onset MS

Thanks everyone for your comments on LOMS (Late Onset MS). My neurologists' PA told me I was to old to get MS and I need counseling. I was not a happy camper and told her so. I told her never to mention the "thing" about counseling. I told her I needed to see my Dr., (it has been three years since he has laid eyes on me. I told her I was upset that he had not, "graced me with his presence" during this long period of time. Needless to say I am looking for a new doctor.

Now I have uncontrollable shaking of my upper body. God the PA to order medication for that. It seems to have helped.