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Old 05-21-2010, 06:28 PM #1
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Question The age of onset and prognosis

I read a statement this morning written by a recently diagnosed 50 something year old woman. She said:
Quote:
...The older you are when you are diagnosed with MS, the faster it tends to progress.
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.

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?
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Last edited by Koala77; 05-24-2010 at 07:57 PM. Reason: Fixed typo
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Old 05-21-2010, 06:37 PM #2
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Quote:
Originally Posted by Koala77 View Post

Have any of you ever been told that age directly relates to the type of MS one has, or can you 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.

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Old 05-21-2010, 06:53 PM #3
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When Docs are in the throws of DXing you, age is usually bantered about. Obviously they know about as much as we do..

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

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.

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Old 05-21-2010, 09:24 PM #4
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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.
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Old 05-21-2010, 10:08 PM #5
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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.
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Old 05-21-2010, 11:38 PM #6
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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.
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Old 05-22-2010, 10:22 PM #7
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Thank you everyone for your replies. My question has definately raised some excellent points for discussion.

Quote:
Originally Posted by Debbie D View Post
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...........
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 ), 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.
Quote:
Originally Posted by Blessings2You View Post
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.
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.
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