This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi Everyone,

Sorry for my crystal ball questions but unfortunately i can't switch off the "continuously thinking about ms button"

I have been told by my neuro that they can get a better idea of what a person's ms will do after observing what happens in the first 5-10 years.
I have also read that this may be an indiction of how benign/aggressive your ms may be in the future.

For a disease that is so unpredictable and is still a big mystery even to neuros, i don't know how they can claim such a thing.

Has anyone heard this before?

Elly

Hi Elly,

There is good middle of the road explanation here http://www.msif.org/en/ms_the_disease/t ... of_ms.html
Like every other aspect regarding MS, speculation goes from one extreme to the other.

When you're at that website, "The History of MS" link seems pretty interesting too.

Bob

Thanks Bob,

Good article, if it's true then i'm happy as thankfully i have been very well.

I quite like that website too, they have very interesting entries by people with ms who are sharing their stories.

Elly

Although I can't remember the exact citation, I am pretty sure that sometime in the past year there was a study that tried to pinpoint more precisely predictive factors. It seemed that problems with sphincter control, for example, were more predictive of a less positive outcome than demographics such as age and gender.

Does anyone else remember what the other main predictive factor was?

- Arcee

No

_________________
Had ms for over 19 years now.

Like Robbie, I have to say "No"

For about fifteen years my MS, contracted at the age of 24, was very benign, then suddenly it took a turn very rapidly for the worse. No-one could have predicted that.

Sarah

_________________
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Another vote here for "No."

gwa

What elly's neuro told her doesn't seem that far from the truth although it would have been more accurate to say that "they can get a better idea of what a person's ms might do after observing what happens in the first 5-10 years."

Obviously predicting average outcomes isn't good enough when considering that people with MS are individuals who wants to know what THEIR future has in store for them and hearing what most people experience is useless information.

Bob

What Ellys neuro told her is bullshit and should never have been said. I was really good up until about the 10 year mark and then it all went to hell. They should keep to what they no for sure which isn't much.
Elly you might be just fine and you might not only time will tell and that's fact..

_________________
Had ms for over 19 years now.

Sorry Bob, I totally disagree with your statement,

""they can get a better idea of what a person's ms might do after observing what happens in the first 5-10 years."

Like robbie said, this is total BS as far as doctors predicting MS outcomes based on some arbitrary number of years.

Maybe you will have a better "feel" for what this statement means after your wife has had the disease for a few decades. A lot of people on this board started out calm for years and then got slammed with the disease. What happens in the first ten years is very unimportant in the long term with MS.

Just my very experienced opinion.

gwa

Hi gwa,
I'm not arguing with you guys. Doctors CANNOT accurately predict the future course of an individual's MS. Now way, no how.

With that said, there are averages for everything. People are desperate to know what the course of their disease is going to be and I think they are being told what the averages are and I think they are being told that is the average situation and not necessarily what they are going to personally experience.

In the case of my wife and I.....our life was going along just fine until the sudden diagnosis of MS. It's too bad that I went into it with more than average knowledge of MS because otherwise?? at that point a nice big dollop of sugarcoating would have been fine with me.

I know that honesty is the best policy but even if they could predict future course with 100% accuracy, I'm not 100% sure that I could handle the truth, or that I would want to handle the truth.

Bob

(From the book "MULTIPLE SCLEROSIS: THE HISTORY OF A DISEASE)

PROGNOSIS
The conclusions about prognosis varied over the century after Charcot’s
initial description of MS. Early in the history of the disease, patients were
diagnosed at a late stage, and only when they had a typical relapsing and
progressive course. Such advanced cases gave clinicians the idea that
patients did not live long. Many stated that patients lived only a few years
after the diagnosis, but a few felt that patients lived a long time. It is
worth noting that Saint Lidwina, Margaret Davies, Augustus d’ Esté,
Heinrich Heine, and Margaret Gatty all lived for many decades. Only in
the 1940s would it be recognized that life expectancy was only slightly less
than anticipated.

Duration of MS (Modified from Thygesen, 1953)

Gowers, 1893 3-6 years (quoted by Allison, 1950)
Bramwell, 1917 12 years in 170 fatal and nonfatal cases
Curtius, 1933 10 years in 100 autopsy-proven cases
Gram, 1934 10.3 years in Danish Invalidity Insurance
material
Brain, 1936 12.5 years in 11 fatal cases; 13.6 years in
those surviving at follow-up
Drobnes, 1937 12.5 years in 46 fatal cases
Sällström, 1942 9.2 years in 285 fatal cases (range 1–41
years)
Carter, Sciarra and 13 years in 46 autopsy-proven cases
Merritt, 1950
Lazarte, 1950 13.7 years in 85 fatal cases
Limberg, 1950 27 years from US death certificates.
Average age at death: 54
Allison, 1950 19.5 years in 28 fatal cases, 27.8 years in
survivors at follow-up
Müller, 1949 16–34 years
There has been confusion about what features indicated a poor prognosis.
Birley and Dudgeon (1921)15 found the most favorable prognosis in
those who were having acute attacks, confirmed by Misch-Frankl (1931),
Brain (1936), and Miller (1949). MacLean et al. (1950) calculated thatthose with recurrent attacks became disabled at a rate of four percent per
year.16 Coates (1930) noted that those with a gradual onset were unlikely
to have remissions. Thygesen found from his cases that of those with a
progressive onset in the first year, 43 percent were dead at 15 years, while
of those with relapsing-remitting onset in the first year, only 21 percent
were dead at 15 years.17 It was accepted that those with signs of cerebellar
disease had a poor prognosis (Misch-Frankl, 1931; Brown and
Putnam, 1939; Thygesen, 1949) and those with a spinal form had a better
prognosis (Brain, 1936; Sciarra and Carter, 1950). Thygesen felt that his
cases and those of others showed that a late onset had a better prognosis
(Brain, 1936; McAlpine 1946; Thygesen, 1949). Others found a better
prognosis if the onset was at a younger age (Müller, 1949).18
Müller felt that the discrepancies concerning prognosis and other features
in the disease were:
“artificial, caused by ‘statistics,’ and a result of the different prognostic
criteria and extremely varying interpretation of ‘slowly progressive
disease,’ ‘rapidly progressive course,’ ‘persistent progression of symptoms,’
‘progressive bouts,’ etc. The inaccuracy of retrospective evaluation,
moreover, contributes to increase the confusion.”
R. Müller, 194919

The best thing people with MS can do is to live their life to the fullest and best that each one of us is capable of and ignore postings.

No one has a clue what the next year will bring in any situation. A disease like MS is particularly challenging and it is totally unpredictable.

Many of us haven't been to a neurologist for years and these doctors have no idea how we are doing now.

gwa

Hi gwa,
That is something I'd never suspected. Trust that I'm curious and not being judgemental. My wife was only diagnosed 1 1/2 years ago and is in a clinical trial so we've been to more neuros than you can shake a stick at.

Why don't you go to a neuro?

Do you just let your GP handle MS related medical problems?

Bob

I need to say that i do like to hear anything positive about ms...anything that can give me hope that a good outcome is a possibility.

I would like to know where they get this information from...do they make it up as they go along or is it something that has been researched and these are the results.

The ms specialist told me a similar thing, she said she would put me in the best "basket" because of my age, sex and only sensory symptoms.
I realise that everyone is different and not everyone who is is the same catrergory as me will have the same outcome but the way they talk about it i would think that most will have a good outcome.

It seems that at the 20 year mark the s**t hits the fan from what i've read on other posts, especially in people who have been well until then.

No matter what the statistics say etc i choose to believe that i will be fine, even if that's somewhat naive. I'm certainly not going to go out and buy a wheelchair in case i need one in 20 years. I'm not planning for the worst.

I also think that i need to stop reading other peoples terrible and frightening stories about what has happened to them on other forums.

Elly

I don't think doctors can predict how a person's MS will go. Doctors haven't even made up their minds about whether MS is one disease or several. And they're not prophets.

I've had MS since 1978 or maybe even 1961, as I posted in another thread here recently. I got a wheelchair 4 years after diagnosis, but at that point Type 2 diabetes had entered the picture for me as well. I still have the wheelchair, still sit in it most of the time, but I also can walk--a mile on good days.

If anyone had tried to predict how my MS would progress (or not progress), I wouldn't have believed the prediction.