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.

I did read somewhere (?) in my earlier research that the prognosis was not as good for those who were older at onset. I'm going to see if I can find it again (ha). I didn't do any research at quacks-r-us.com or anything like that, so it would have been somewhere reputable. Of course, it also could have said "it is thought that....", the official slogan of MS.

This was from a study (2006?) by the American Academy of Neurology:

Conclusions: Late-onset multiple sclerosis (LOMS) is not necessarily associated with a worse outcome: first, progression in the primary progressive or relapsing patients differed little between late-onset vs adult-onset; secondly, those with LOMS were older when reaching Expanded Disability Status Scale 6. The disease course has a far greater implication for disease prognosis than the presence of LOMS.

This is from my own experience with family members, so please bear with me. :o

My Grandmother (dad's mom) didn't get offically diagnosed until she was in her 50s. The progression seemed much faster, but she had issues and flares much of her adult life that the doctors at the time ignored or didn't understand. Being a pathologist, she knew it was neurological - but they couldn't say for sure what it was until later. So in her case, it was the fact they didn't catch it until her symptoms got bad enough.

My mother, who had a very rare and aggressive form of MS, was DX'd at 29 and was totally disabled and bed-ridden by 39. I believe they call it PRMS now.

So like everything else with this disease, I believe it varies case to case. So far even my own path seems to be different. Dx'd at 33, and knock on wood - stable for 3 years.

What does edss of 6 mean?

The Expanded Disability Status Scale (EDSS)

0.0: Normal neurological exam.

1.0: No disability, but minimal signs in one functional system (FS) are present.
1.5: No disability, but minimal signs in more than one FS are present.
2.0: Minimal disability in one FS is present.
2.5: There is mild disability in one FS or minimal disability in two FS.
3.0: There is moderate disability in one FS or mild disability in three or four FS. However, the person is still fully ambulatory.
3.5: The person is fully ambulatory, but has moderate disability in one FS and mild disability in one or two FS; or moderate disability in two FS; or mild disability in five FS.
4.0: The person is fully ambulatory without aid, and is up and about most of the day (12 hours) despite relatively severe disability. He or she is able to walk 500 meters without aid or rest.
4.5: The person is fully ambulatory without aid, and is up and about much of day. He or she is able to work a full day, but may otherwise have some limitations of full activity or require minimal assistance. This is considered relatively severe disability. Able to walk 300 meters without aid.
5.0: The person is able to walk 200 meters without aid or rest. Disability impairs full daily activities, such as working a full day without special provisions.
5.5: The person is able to walk 100 meters without aid or rest. Disability precludes full daily activities.
6.0: The person needs intermittent or unilateral constant assistance (cane, crutch or brace) to walk 100 meters with or without resting.
6.5: The person needs constant bilateral support (cane, crutch or braces) to walk 20 meters without resting.
7.0: The person is unable to walk beyond five meters even with aid, and is essentially restricted to a wheelchair. However, he or she wheels self and transfers alone, and is active in wheelchair about 12 hours a day.
7.5: The person is unable to take more than a few steps and is restricted to wheelchair, and may need aid to transfer. He or she wheels self, but may require a motorized chair for a full day's activities.
8.0: The person is essentially restricted to bed, a chair or a wheelchair, but may be out of bed much of day. He or she retains self care functions and has generally effective use of arms.
8.5: The person is essentially restricted to bed much of day, but has some effective use of arms and retains some self care functions.
9.0: The person is confined to bed, but still able to communicate and eat.
9.5: The person is totally helpless and bedridden and is unable to communicate effectively or eat and swallow. 10.0: Death due to MS.

My EDSS...

1964 - 1
1968 - 1.5
1972 - 2
1974 - 5 Exacerbation
1976 - 4 1st DX

1977 - 2 Remission

1992 - 5 Exacerbation
1993 - 5 2nd DX - IVSM Hosp TX
1994 - 3
1996 - 3.5
1998 - 4 Exacerbation - IVSM TX

2000 - 5 Avonex for 7 mos
2001 - 5 Copaxone for 10 mos
2002 - 6.5 DX SPMS
2003 - 7 - LDN

2010 - 7 No progression in Disab, since LDN.

Next, Anyone?

Thank you everyone for your replies. My question has definately raised some excellent points for discussion.

It's interesting that your Neuro seems to negate that woman's claim Debbie while at the same time implying that we're all going to progress with age or years diagnosed.

I was diagnosed at 25 and have been diagnosed for over 30 years now (do the sums :D ), and although I'm no longer able to work, it was a combination of medical conditions rather than just MS, that caused me to give up my career and accept a disability allowance.

After over 30 years I still have RRMS, and I consider myself luckier than many because that I still am RRMS. Lucky is a strange adjective to use when discussing a chronic, incurable neurological condition, but you get the idea.
Thank you Blessings. I guess that statement says it all and does reflect my own thoughts from the beginning. I appreciate you looking it up for me especially as I was unable to find anything like this myself.

Thank you for telling your story Finlady, and I'm sorry about your mom. I'm glad that you're doing OK and I hope it stays that way for a very long time.

Thank you everyone else who've replied so far. I truly appreciate the information that you've given and the thoughts you've shared.

I was diagnosed at age 44 but I'd had it for several years for sure; maybe for decades mildly. I think there is too much to consider to make broad statements related to age alone. I'm 52 now and it's either mild RRMS or mild SPMS that I have. I don't get symptoms anymore like relapses but I still have the old stuff that hangs on. Hoping I don't get relapses anymore, anyway. :smileypray:

Remember, that study/quote is four years old. But that's what I remember reading.

My story is much like Wiz's. I haven't had a true flare or relapse for probably four years or more. Am I still R/R? Am I SPMS? Do I really want to know?

My same symptoms vary in intensity, but never really go away. Pseudo-flares, maybe?

Diagnosed at 55. Just sick enough that I'm scared not to take a DMD, just well enough that I'm scared to take one. :confused:

I started out with a dx of "stocking/glove peripheral neuropathy" and bilateral CTS, the p/n blamed on extended use of flagyl. After almost 8 years of worsening numbness, parasthesias, and weakness, plus the addition of a couple episodes of vertigo and the "hug" I moved my neuro care to the MS clinic. Right now I am carrying a dx of "transverse myelitis" and he is working to rule out myelitis optica (abandoned the p/n dx because of strong deep tendon reflexes which should be absent in p/n). . . but is not calling it MS yet. However, since I saw him a couple of weeks ago I have been having a flare up of symptoms, worse pain and spasms, and recently headaches. So far my MRI's have not revealed any "smoking guns" so to speak, but my neuro acknowledges that a negative MRI is not definitive for a negative diagnosis either.

I believe I started out in 2002 @ 2.5, which has progressed to a 5.5 at present. It is hard to assess completely based on neuro symptoms because I also suffer disablity from Crohn's, being some incontinence (I have no large bowel) due to a less than perfect anastamosis of my j-pouch. I haven't worked since 2002 due to Crohn's. I can still walk without an aid.

My symptoms began at around age 50. Eight years seems like a pretty speedy progression, especially since I was supposed to be living a very close to a normal life by the end of 2003 following my GI surgeries, only to have my neuro symptoms kick into high gear.



My question of the day: How do you respond when people tell you they hope you will 'get well" or be "feeling better?"

Pffft, Jim was dx'd at age 22 and his poop went down the drain fast! So, age has nothing to do with it in my opinion. As a matter of fact, has that lady considered aging may have something to do with some symptoms and it's not always ms? :p

I want to give them a headsmack and tell them that I hope they'll "get smarter" someday.

The feeling better doesn't bother me. My symptoms are so up and down, I do have good days and bad. I always cross my fingers for a good day.

The get well part - I try not to say "I will, when they find a cure and a way to repair the damage." Though if the tone of the person was not nice, I'd say it anyways. :D

It doesn't bother me when people say they hope I am feeling better or that I look good. I would have probably said the same thing prior to my dx and learning about MS. Occasionally I do say well "it is better to look good than feel good:)"

I say "thank you." I truly don't have enough energy to think of a negative or sarcastic comeback.

i havn't read or been told that.
i was dx'd when i was 53. i'm relatively stable. had some progression but it could be worse.

found this youtube video refreshing...SHIFTING MS
 

i've read different research about age of onset/disability...progression....but can't stress...have to just deal and when i feel down/out about the yuckiness...hope for a better next day...

http://www.youtube.com/watch?v=59HQ6...layer_embedded

Thanks Volada....Good video!!:hug: