Multiple Sclerosis

[bacchae]

I was diagnosed with MS four years ago March 3rd. I usually don't have more than one relapse a year, so I usually don't think about MS unless I'm going to get in a hot tub (so I know to limit my time in the heat) or drink alcohol (again, I know that I have to set limits for myself). However, I just started dating this great guy who wants to know more about MS At first, I just let him look things up on his own. This turned out to be a horrible idea because all of the information he found was about how devastating this disease can be. Now, I'm trying to find things for him to read that are more positive, but everything I see is leaning predominately toward the negative. Do any of you have any good statistics I can show my potential bf? I remember reading in one of my MSQRs that approximately 20% of people diagnosed with MS never suffer another relapse after the initial diagnosis. Have you found any websites, magazines, or books that can support that information?

[stulchinsky]

Hi Bacchae,

More information on this topic can be found at:
http://www.neurologychannel.com/multiplesclerosis/index.shtml

Here is an excerpt from the article on types of MS:
"Primary progressive MS causes steady progression of symptoms with few periods of remission."

[bacchae]

Thanks for the reply, stulchinsky! Since I posted, I've actually found some helpful information. The first is from http://www.mult-sclerosis.org/. This is the first time I've read anything about MS that was really forthcoming

So what will multiple sclerosis do me?
This is a subject that is rarely brought up on the forums that I have frequented and it's also something that is hard to elucidate from Internet sources. I guess this is partly because a lot of people deal with MS by living in the present - there's no point dwelling on an unpredictable future if you can make the present into a good place to be. However the main reason that it's hard to get hold of any forecasts for the course of MS, is that it is, by its very nature, unpredictable.
Predicting multiple sclerosis is like forecasting the British weather. If you've spent much time on these islands you'll understand how fickle the weather here can be. Weathermen can only give the vaguest of indications of how things may turn out and, even then, only for the next few days. MS is similar - you can say that a number of factors are correlated with a poorer disease outcome but not with a great degree of certainty. Long-term benign disease courses can suddenly become progressive just as malignant courses can suddenly reach plateaux. With MS, nothing is certain.
Before delving into which indicators statistically lead to better or poorer outcomes, I would like to emphasise that these results are derived from statistics, and, as I shall demonstrate later, statistics should always be taken with a healthy measure of scepticism. See my section on MS and statistics. Furthermore, the inputs to these statistics are unquestionably non-parametric and multivariate and as such especially liable to error. This is born out by the results in the prognostic studies - some of which flatly contradict others and only a few indicators of disease outcome are common to all the studies.
Additionally, because of the perverse nature of this disease, you cannot say with any degree of certainty that, even if you match with some of the negative factors, that MS is going to be malignant for you. For example, there are plenty of men who have a benign disease course and yet, statistically, male sex is one of the factors correlated with relatively a fast progression. Remember also that 75% of PwMS will never need to use a wheelchair and that the majority of us will not die from MS, either directly or indirectly.
It is important to note that most of the studies, from which I draw my data from in this section, were conducted before the so-called ABC treatments (see next section) were in common usage. The effects that these drugs will have on long-term prognosis are not clearly defined, but it is safe bet that they will generally improve the disease course for people who use them. Furthermore, there is a vast amount of research work going on at the moment, which will, in all likelihood, result in treatments that will further improve the prognosis. It's an odd thing to say, but there's never been a better time to be diagnosed with multiple sclerosis.
My own personal philosophy that there is little point dwelling on potential futures because the present is where you are at just right now. Don't miss out on that. We are all mortal whether or not you have MS. Take whatever actions you can to slowdown the progression of the disease and then get on with living. As one wise PwMS said, "Hope for the best, but prepare for the worst".
Stop waffling, tell me what these indicators are!
Factors indicative of a benign disease course:

* Initial symptoms purely sensory or optic neuritis.
* A long interval between the first two relapses.
* Disease onset before 25 years of age.
* Few lesions showing on MRI scan onset
* Low number of affected neurological systems 5 years after onset
* Low neurological deficit score 5 years after onset
* High degree of remission from the last relapse
* The absence of Myelin Basic Protein (MBP) in the cerebrospinal fluid (CSF) during remissions.
* Onset symptoms from only one region.
* Female sex.

Factors indicative of a malignant disease course:

* A greater number of neurological areas affected at onset.
* Many lesions showing on MRI scan at onset
* Pyramidal, cerebellar and sphincter involvement at onset.
* Co-ordination symptoms at onset.
* Progressive disease course at onset.
* Oligoclonal banding in spinal tap present in the early phases of the disease.
* Disease onset after 40 years of age.
* Less than one year interval between the first two relapses.
* Motor symptoms at onset.
* Brainstem involvement at onset.
* Male sex.

This website was useful too: http://mscenter.ucsf.edu/faq.htm

Disability resulting from the first five years of the disease tends to predict the level of disability 15-20 years after diagnosis. Thus, it is often said that patients who have little or no disability five years after their diagnosis have the most favorable prognosis. Fifteen years after diagnosis, approximately 50% of patients will use a cane or other assistance to ambulate. Twenty years following diagnosis, approximately 60% of MS patients are still capable of ambulation, 20-30% maintain employment, and less than 15% require custodial care. Life span is shortened only slightly compared to the general population.

Of course, things can always change unexpectedly, but since I've experienced no disability after the first four years and have yet to begin treatment, it seems that I might be one of the really lucky few.

Thanks again!