This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi Everyone,

I have just got a few questions on my mind that i would rather ask here and not my neuro.

A week ago when i had to go into hospital for iv steroids, lp and vep i spoke to the head neuro there as he hadn't met me before.
He spoke of ms as a disease that you may or may not go on to develop after a CIS or even if you have a definite ms diagnosis the disease may be a very slowly progressing one to the point where it may interefere very little in a persons life.
Of course this is s lovely thought if perhaps one is delusional
I wonder why they say this to patients, is it so they don't become overwhelmed with fear?? Or is there some truth to it?

He said that these days they don't see as many worst case scenarios as they may have 30 years ago.

I guess i'm trying to stay somewhat positive as i'm very well aware of the worst case scenarios. Having 2 little children that i so desperately want to be healthy for is what drives me to hope that these doctors are right.

Has anyone else heard anything like this?
It's so hard as no-one has a crytal ball to see how we will be affected by this disease.

Thanks

Elly

Elly,

You're right about needing a crystal ball. I don't think the doctor was lying to you. Some have MS for 20+ years without significant disability.

Firstly, I hope you don't even have MS, so all of this is irrelevant to you. Secondly, I don't believe you should worry about how you'll be doing 20 years from now because I think MS will be cured by then.

Below is an abstract of a study published last year that found MS disability progression happens more slowly than was previously believed.

I hope you hear good news at your neuro appointment.



Disability progression in multiple sclerosis is slower than previously reported.

Neurology. 2006 Jan 24;66(2):172-7.
Tremlett H, Paty D, Devonshire V.
Department of Medicine (Neurology), University of British Columbia, Vancouver, Canada. tremlett@interchange.ubc.ca

OBJECTIVE: To investigate disease progression and risk factors in a large geographically based population with multiple sclerosis (MS), using two different inception points--clinical onset and date of birth.

METHODS: The authors reviewed a database of subjects with definite MS and symptom onset prior to July 1988. The main outcome was sustained progression to Expanded Disability Status Scale (EDSS) 6 (requires a cane), using the date of birth and date of MS onset as inception points in separate analyses. Risk factors examined were sex, relapsing vs primary progressive course, onset age, and onset symptoms.

RESULTS: The study included 2,837 patients, followed prospectively for 22,723 patient years. The median time to EDSS 6 was 27.9 years, 15 years after onset; only 21% reached EDSS 6, and by age 50, 28% required a cane. Men progressed 38% more quickly than women from onset (p < 0.0005), yet both required canes at similar ages: 58.8 years for men and 60.1 for women (p = 0.082). A younger onset age predicted a slower progression, but those older at onset were consistently older when reaching EDSS 6. A primary progressive course predicted a more rapid progression from both onset (p < 0.0005) and birth (hazard ratio = 2.7 [95% CI: 2.2 to 3.3]). No onset symptom consistently predicted progression.

CONCLUSION: Disability progression in multiple sclerosis (MS) accrued more slowly than found in earlier longitudinal studies. The authors also challenged two fundamental concepts in MS, demonstrating that neither male sex nor older onset age was associated with worse disease outcome.

Pubmed reference

Thanks Dignan,

That article was interesting.

Do you really believe that in 20 years there will be a cure? or just better treatments to keep ms at bay?
That would be wonderful!!!!

Elly

Hi Elly,
I understand where you are coming from, and it was stated very well. In the first flare, my doctors pumped the steroids, did the lps (three of them at three different hospitals...all "positive") They got the flare under control and told me it may never come back... or I may wake up next month without mobility again.

They said they would recommend meds... but at the time, there was no way I could convince myself to take bi-daily injections without KNOWING this was a chronic illness and not just a flare of something else. (Or a "mono" sclerosis or such... where it only happens once)

Anyway, a month later I couldn't walk again and agreed to go on the meds. (again stabalized and currently living quite well)

It's so hard to accept a diagnosis that is based on what COULD happen. I needed to see that this disease was not jokin' around. That was my crystal ball. For others, they hear the words MS and want the interfurons THAT DAY. It's personal choice... but I just couldn't live with the side effects without "knowing for sure".

No matter what, please talk to you doctor as well as us. He/She should be able to field your questions or refer you to someone who can. You shouldn't feel like you can't ask Qs of your doc. Saying something like "Are you saying that just to make me feel better, or do you really mean it" is good. Or... "What would YOU do if you were in my shoes" or "What would you tell me to do if I was your sister/mother/daughter" helps too. Then they will often cut the bullshat and give it to you straight(er).

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"Some women aren't meant to be tamed... we are meant to run free until we find someone just as wild to run with"

Doctors are not god, they don't know for sure what the outcome will be for anyone, however, a good MS specialist will be able to make an educated guess to the possible course from a combination of your medical history, the MRI findings-where the lesions are located, type of symptoms you experience etc, Evoked potentials, LP etc.

It is extremely easy to imagine the worst case scenario and you cannot live your life now based on what may or may not happen twenty years down the line.

Doctors often have a strategy about what they tell a patient, dependent on how the patient seems to be handling the news of diagnosis or potential diagnosis- if they think the patient is handling it badly they present a more upbeat image of MS, if they think someone hasn't taken it on board then they often present the worst case scenario. I am not sure I agree with this approach as they are making decisions based on very little hard information about a person, nether the less many do this.

MS is a very variable condition, for example I have had it for just over 2.5 decades and never had to take steroids, only two 'offical' relapses when I was 17 and 23 and have no disability or even an EDSS number yet I had a positive LP at 17 and have around 7 lesions on MRI.

My first attack led only to a diagnosis of possible MS and my second attack which was also mild led to diagnosis and the extremely few episodes I have had since don't even qualify as a relapse as they do not last the designated period. So MS has no physical impact on my life, but this doesn't mean I don't do what I can to make sure it stays this way.

If you feel you can't ask your doctor questions find another one that you trust and feel comfortable with.

Manchester

Do you truly feel Manchester that you could do something to bring it on?

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Had ms for over 19 years now.

I think alot of this comes from the fact that they can make the diagnosis so much earlier. Alot of these "mild MS" people over the years have probably been told they have stress or some other ambiguous condition. You still have to live by the "hope for the best but prepare for the worst" mantra or you could get really caught off guard.

The bottom line is no one knows. Alot of this is just as it appears; pure speculation. Do all you can while your hat is in the ring and hope you never have to take it out.

Not sure what sense you mean Robbie? If you mean do I think that my behaviour in some way can make the MS worse then on a very basic level of too much stress, catching the flu, not taking care of myself then possibly it might contribute to a worsening. But only possibly. There is information in pyscho-neuro-immunology that suggests links from stress to MS but as yet the jury is still out on what this actually means and what kind of stess does this- maybe more chronic than a short burst etc.

However, saying that I can give you an example of how it has not affected me, last year I split up with my partner of many years, at the same time I caught flu (raging temperature) and I am still tussling over the property we bought with mounting legal fees, yet with all that I am still fine and not even a slight glimmer of a symptom never mind a relapse.

I also have a step -cousin who developed MS at the same time as me (no relation) and within 5 years was in a wheelchair, I hesitate to mention her as an example as she is the extreme end of the spectrum and her progression is extremely uncommon. I am only doing so because it shows the randomness of this disease.

Her MS has progressed to such a stage over the last twenty or so years that she now cannot walk, see or speak (except heart wrenching almost guttural moans and screams )and has dementia.

She didn't do anything to bring it on or to cause herself to be in this position. In contrast I have lived (to date) a very full life and haven't let many opportunities pass in partying to the small hours, travelling around the world or trying.. ahem.. certain substances etc etc. I don't these days but that's more to do with growing up than anything else.

So if you can do something to bring MS on then shouldn't it be me in her position and her in mine?

With this in mind, I can't really answer your question with any categorical statement but for the last 15 or so years I have really lived as well as possible, made sure I eat healthly, exercise, get 7 hours sleep a night, take supplements and try to keep stress to a minimum as why take any more chances health wise than I have to.

Manchester

Hi Elly-
I think that what that neuro told you is correct, there doesn't seem to be any set course for this disease. I had my first exacerbation at 19, then a smaller and less severe one at 29, neither of which were officially diagnosed as MS, only possible, along with at least 5 other possible causes for my symptoms. (Dontcha just love ambiguity?)
Then at age 39 I had another one, pretty bad foot drop, and it was only my lucky day that the on-call neuro at the hospital happened to be the local MS specialist. He kind of took over my care at that point, got a history from me, etc..long story short- due to the lack of serious progression physically none of the other neuro's truly thought that MS was actually the problem. Not really their fault, but to me it's better the devil you know....currently on Avonex and still doing okay.
You could very well go on through life with no more problems than you have at this point!! I am far from perfect health, but I think that all in all, I am pretty fortunate. A positive attitude will get you a long way in this battle! Hope all goes well at your appointment!

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Beck

Elly,

To answer you question, yes, I think a cure within 20 years is likely. Of course I offer the usual disclaimers that I'm no expert, and I'm an incurable optimist, but still...

Just in the last few years, there seem to be a lot more research studies that are looking at MS from different perspectives. Also, there are seem to be more collaborative efforts where researchers around the world are sharing information and coordinating their work.

I think a significant amount of the progress we've made in understanding MS in recent years is due to technology improvements, most notably I think, MRI and other imaging technologies. It seems to me that what's holding back a cure right now is mostly related to imaging -- i.e. seeing what is actually happening in our grey and white matter over time, or even watching changes taking place in real time.

I think those technological changes are coming. The technology guru Ray Kurzweil has made a lot of technology projections based on the historical rate of technological progress. He believes that we will have completely reverse-engineered the brain somewhere in the 2025-2030 range. I believe we should be able to cure MS at least slightly before we have a full understanding of how the brain works.

It will really be something twenty years from now to see where their at with this, all our posts will be lost and forgotten, if only you could look into the future and end all the unknowns , i look at ms and other diseases like global warming it's a part of what we have become. Life is not meant to be free of sickness it's part of it, you can't make it go away without upsetting the balance of something else, something that could be much worse. The war in Irac "its our childrens children war"You can't change what is unchangeable. Why do we try?Just to keep the wheels turning..

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Had ms for over 19 years now.

To some degree that is absolutely true robbie.....

Yes there have been major medical advancements in the last 100 years. Our drastically longer life span is proof of that.

On the other hand, sometimes it really isn't nice to fool with Mother Nature.

Because asthma, allergy and autoimmune disease has been a fact in our lives, our parent's lives and the lives of our grandparents, it's easy to incorrectly assume that these diseases have always been a fact of life.

A hundred and fifty years ago these immune dysfunctions were unheard of here and they continue to be unheard of in large parts of the world.

Everyone knows what I think led to the increased incidence of these diseases but regardless of what is responsible, it's alway made the situation so much more ironic that populations continue to be unaffected and that our own population was unaffected until the last century or so.

Of course in this case I consider your above statement absolutely prophetic.

Bob

But Bob, what about Saint Ludwina of Scheidam? Don't forget Saint Ludwina! OK, OK, I don't really know a damn thing about Saint Ludwina, but it's an interesting foot note in the history of MS...


http://www.aecom.yu.edu/home/ejbm/PDFs/ ... ione73.pdf

Wow! That's awesome dignan, did you just find this one or have you been keeping it under your hat for a while?

I'm in the middle of working on my daughter's car and came in to use the restroom, but I look forward to reading this tonight.

God how pitiful my life has become, looking forward to reading histories of ms.

Then again, when you're laying beneath a car in icewater, a wide variety of things seem more interesting

Bob

Great find Dig!

TOL