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?"