The age of onset and prognosis
 

I read a statement this morning written by a recently diagnosed 50 something year old woman. She said:
I personally think that progression is just part of the MS lottery and that we're either allotted RRMS, PPMS or a combination of both with Secondary Progressive MS. I believe that's what determines our own progression, and not the age at which our symptoms began.

So far I've not been able to find anything to substantiate her statement so I decided to come here and ask the experts. :D

Have any of you ever been told that age directly relates to the type of MS one has, or can you remember reading it anywhere?

No one has ever told me that age is a factor in the type of MS.

Her opinion is just one person's opinion, take it or leave it, but don't worry about what she thinks.

gmi

When Docs are in the throws of DXing you, age is usually bantered about. Obviously they know about as much as we do..:rolleyes:

My Neuro, thought I was too old, at 35, for MS..:rolleyes: When I told him that I had had SX of MS, since I was 24, he perked up.:p

My MS is mine and yours is yours, so it doesn't matter, who's got what at what age...it doesn't answer our questions.

:hug:

I was DXed at 46 with PPMS - said to have a later onset than RR. At 53 I was full time in a chair.

I believe for 8 years previous the dizzy, urine urgency,tiredness were MS moving into my body, nothing so much that I couldn't (and doctors I discussed this casually with) explain being from age, working and having twins. At 2002 I was DXed but still running strong. It gradually got worse, Canadian crutches to walker to wheel chair. MS bites.

Thank you ladies.

I've met a whole heap of people now with an MS diagnosis, both on the Net and face to face, and among them are people from each MS group. Most of the ones I've met in person are either my own age, or younger.

Among them, most of the males have PPMS with varying disabilities, while the females with PPMS are quite debilitated and in the older age group, but although diagnosed in their 50's, their symptoms began years or even decades before diagnosis. The rest have RRMS or SPMS.

The reason I brought this up for discussion was (a) the subject interested me and (b) I thought I might like to reply to her claim, but then I could find nothing on the Net to either prove or negate her statement.

I personally think it's hogwash, but when replying to something posted by another person on the Internet (or anywhere for that matter), opinion doesn't count for much without the facts to back it up.

I dont think your age has anything to do with when your diagnosed. Since I think most people with MS have probably been symptomatic for years, most people probably dont have symptoms that are bad enough to go to a doctor until they get a fairly acute or severe exacerbation that finally sends them to a doctor.

I know I had symptoms for at least ten years before I had that first experience with optic neuritis in August of 2006.

I'd wake up some mornings and my hands or fingertips would be numb. It'd usually go away in less than a day, but I wondered what was causing it. (thought I was sleeping weird and hurt my neck or something)

I had mononucleosis in early 1996, and I'm pretty sure that's what woke up the MS and made it active. I had a fairly high fever for about two weeks during the mono (hovered around 101 most of the time and was 103 - 104 at it's worst) and had problems controlling that. I've wondered if having that fever for as long as I did had something to do with the MS.

I actually think I had the MS before the mono tho. Since I can remember a time when I was probably about 9 or 10 and had vertigo for a month. I dont remember if I went to a doctor for that, but I was dizzy for at least a month...and then it went away and I didnt have a problem with it again until after the mononucleosis.

I also remember having pain in my ribs a few years before the mono that I know now is The Hug. So, I think I've probably had the MS for years, it just didnt get bad enough for me to have serious problems with it until 2006.

Some lucky people die of natural causes in their 90's, and on autopsy, their brains have many definite MS lesions, yet they never had any problems, symptoms or disability, ever.:confused:

Now pediatric MS is rearing it's ugly head more often, and finally it is being diagnosed early. It is presenting in a different series of symptoms and disabilities. :confused:

MS is a very weird disease, nothing is standard, it follows no set rules, and still no really known cause or cure.

Some can be disabled, yet they can't diagnose MS for sure. Leaving people in limbo for a long time.

One of the physical therapists that's been working with my mom and her broken shoulder (btw, she was declared HEALED today by her doctor...yay!) told me his cousin was diagnosed with MS about a year ago. She's 17. She'd apparently been having symptoms since she was about 7 or 8.

Her neuro told her she was the youngest MS patient he's ever seen.

Blew my mind when the PT guy told me that. I cant imagine being that young and being told you have MS. Apparently her MS is really bad. PT guy told me his cousin is already legally blind now and she walks with a limp (and possibly a cane)

I really hope that I see a cure in my lifetime. (would love for the cure to be the liberation surgery) I really hope I see a cure for MS before I become disabled.

I dont expect that to happen tho.

I've read info that states that the older you are, the MILDER your MS will be. But my neuro has stated in many lectures that it's the length of time that will determine disability. He feels, after years of treating MS patients, that after 10 years many MS patients will go from RRMS to SPMS, with disability in some form or another presenting.
I was dxd when I was 53, but had sxs for years before, mostly blamed by various neuros on migraines (never had them) or my fibro, which has many of the same sxs as MS.
It worries me that my neuro has told me that my MS has "changed." won't put letters to it, but we both know that I'm not doing very well.
I just feel so bad for the MSers who get it so young. They are looking at a very long, hard road ahead.

I was dx three years ago when I was 50 although I also was most likely experiencing mild symptoms for over ten year (partial numbness on bottom of left foot and fatigue). For the past two years my MRI's have not shown any new lesions. I wonder at times if I have already progressed to SPMS as my disability is permanent.

I have heard both versions regarding age. I remember when I was dx I asked my neuro about the likely progress of the disease. All he would say was let's see how you are in five years.

I am not sure it really matters. I also feel really bad for those that are dx at a young age. I am thankful that I did not begin to experience all of these problems until I was 50.