When is a question about prognosis a soup question?

by Michael S. Kaplan, published on 2009/11/27 07:01 -05:00, original URI: http://blogs.msdn.com/b/michkap/archive/2009/11/27/9929280.aspx


Not even vaguely on-topic, sorry. I'll do something more appropriate to an MSDN blog sometime soon. Probably. Well, maybe...

Prognosis.

The definition is [almost deceptively] simple: "a medical opinion as to the likely course and outcome of a disease".

People are often curious about my prognosis.

For the most part they don't ask, mainly because having curiosity does not necessarily give one any actual words with which to ask. There simply no delicate way to pose the question.

I honestly don't spend very much time letting people off the hook here, even when I know what they are doing. Because I don't tend to think of my disease as a conversation point for clearing up the curiosity of others.

Though there are times when a person can have a more practical reason for wanting to know.

A more personal one.

Just recently one of those did come up, and as I realized it and decided to help her I suddenly realized I had the same problem: I didn't really know a smooth way to discuss it, either.

This made me think about my Blog, a place where I have worked out such problems many times over the past few years, sharing all kinds of information with some of my closest strangers. And in my stumbling, Columbo-esque manner solve the problem by communicating the idea. And thus I decided to try this technique again on this new "prognosis" problem.

Ready? Bored yet?

To add a bit more relevance to the matter than to only people who may or may not want to date me, I'll start with the broader question, as it applies to anyone with multiple sclerosis. I'll get specific later on, thus giving a broad framework and then explaining where I fit within said framework.

I'll start by describing four very broad categories. Mine are not the exactly same that the National Multiple Sclerosis Society uses (you can see them described here), as I find their classifications kind of useless for these purposes (though theirs can be useful for other purposes) and thus I'll put my own out there:

  1. Silent MS - also sometimes described as asymptomatic MS or even undiagnosed MS, this is to me one of the most interesting types; it is a case of multiple sclerosis that is only diagnosed after an autopsy shows the characteristic plaques in the white matter of the brain. If there were no autopsy then no one would ever have even known the person had multiple sclerosis at all! Now if you add to this group the people who are believed to have had it based on clinical descriptions after the fact then this group gets even larger, sometimes estimated to be as high as 25% of all cases (though every study I have seen has in my opinion flaws in how the samples were chosen such that exact percentage really is unknown).

    Perhaps to this category one could add people who are diagnosed by an MRI for mild or perhaps unrelated symptoms but who live their whole lives without ever seeing significant disability -- this quiet MS subtype has the same effect as Silent MS and has a similar prognosis (ignoring the psychological effects of the diagnosis which though at time severe are likely no worse than the pre-MRI days when for example a young woman who in fact did have MS was diagnosed with a psychological illness for her reporting of vague symptoms for which doctors could detect no disease).

    To this category I tend to add blame for the (in my opinion) false belief that MS is more prominent in women; the only thing that I believe to be more prominent in women is a willingness to go to the doctor to make complaints that are ill-defined and that seem to go away on their own, whereas men tough it out and then do not get diagnosed. Some men thus end up in this category who otherwise would not be.

    Prognosis of Silent MS is obviously not a significant enough impact on a person's life to even lead to investigation about whatever vague problems may be happening. Thus I'd say the prognosis is quite good.
  2. Acute MS - this is one I would call the most serious form of the disease - rapid onset, quick degeneration, never gets better. Death can occur within 3-5 years.

    Prognosis of Acute MS is obviously not very good.
  3. Relapsing-remitting MS is the kind where symptoms come and go, in a very episodic manner (often but not always apparently triggered by some external force like illness or stress or climate). It is characterized by relapses (called exacerbations) which are then followed by a full or partial disappearance of the symptoms or remissions.

    This type is a type of active disease progress where a new exacerbation can be identical to an old one or it can involve a brand new area which then becomes symptomatic. MRIs often show areas of inflammation where MS plaques exist though tracking symptom to plaque is not as exact as a science as it could be, especially given the quality of a typical MRI scan.

    Prognosis of Relapsing-remitting MS varies widely depending on frequency, duration, and severity of exacerbations.
  4. Progressive MS is the one whose symptoms never come and go -- they just come, and stay. Generally speaking they will just keep getting worse over time, usually in a less random manner than the third category but more of a predictable fashion based on taking current symptoms and assuming they will be worse as time goes on.

    Prognosis of Progressive MS can again very quite widely though tends to be or at least seem worse since it is always there. In practice it may not actually be worse given the lesser or even non-existent amount of new lesions and/or new symptoms. But mileage varies a lot here.

Now every single case starts as Category 1 until and unless there is at point symptoms, and a significant number of people in Category 3 will slip into Category 4 within 10-15 years, and a lot of people who start in Category 1 and ignore their symptoms until later in life and thus appear to slip into Category 4 with no diagnosed stop in Category 3, the kinds of issue that contributes to the (in my opinion unnecessary) "secondary progressive" and "progressive relapsing" and other subtypes often described -- just looking for names to put atop different slides into or out of the various types.

If you just take it as read that these four types are just major groupings that have unique characteristics and that most people will fall into more than one category over the course of the disease, sometimes even more than one at a time, then these other descriptions are not nearly as important - they are just attempts to give some of the real world cases actual descriptive terms. Not an evil idea, but given the situations are seldom as helpful with prognosis (for example progressive MS is often said to have more rapid onset than relapsing-remitting, but the nature of a progressive case undiagnosed until it becomes progressive is often not distinguishable from a progressive diagnosis later in life such that they and probably are often the same thing.

So where am I?

Well I first got what would later become MS in childhood, so from whenever that was until at least 1991 I was in Category 1, and then with my first exacerbation was in Category 3. There was later on some doubt that the diagnosis was right but eventually I was firmly in Category 3.

Some time between 2003 and 2006 I started to become much more a Category 4 person, until finally I was no longer having exacerbations and was definitely just a Category 4 person.

So the time between childhood and 2003 would be when the overall disease was slowly getting worse even though most of the time I was asymptomatic and even when I was symptomatic it was only episodically so.

Lots of MS plaques were initially asymptomatic but then would eventually make themselves known as different kinds of symptoms, and this went on for decades.

Then after that, the clock stopped; at this point I find new "families" of symptoms to be incredibly unlikely, and the shape of my disease now falls within the framework of my known problems just slowly getting worse rather than whole new areas of involvement showing up.

When in time between the early part of 2000 and the middle part I would be better thought of as moving from relapsing-remitting to secondary progressive to progressive relapsing to progressive is a bit like using a Crayola 64 box of crayons to build a section of rainbow going from blue to blue-green to green-blue to green. At some point the color changes, but the timing for arbitrarily putting words to discrete points on the continuum is not really all that important. They are just words that don't say much more about prognosis than could be gleaned by Category 3 being less in control and Category 4 being more so.

Thus now, as I sit in my cool wheelchair (that iBot) I feel like I understand my MS and its course for the future more clearly than I ever have in the past.

I know that when very ill from other diseases (even sub-clinically, such as the time I believe I had A1N1 after TechEd in Los Angeles earlier thus year) I can see some visual symptoms though I do not expect to ever go blind.

And I know that my left side will pretty much always be worse than my right, with coordination in my left hand continually getting worse and worse, enough that I'll depend more and more on one-handed texting and products like Dragon Dictate to use the computer (these are things I do now only when things get bad enough on a given day as I have previously mentioned).

And I know that my balance system will almost certainly continue to decline though now that I am in a wheelchair more and more I will notice this getting worse less and less (something I have also talked about before). At some point when the iBot stops working and can no longer be repaired even for fee (I know of several that are long out of warranty yet are still working so I expect to be running long after the 2013 warranty expiration) there will hopefully be an iBot-esque solution out there or I will have a rude [re-]awakening at some point.

And I know that there may well be some cognitive aspect to my disease though it can hard at times to separate the natural process of aging that causes everyone to feel some decline in this area from my own personal declines in this area as they have never been terribly severe and abilities lost tend to be ones that other people never had so it is hard to even talk about the area without making people listening get frustrated with me attributing to MS what they see as the normal process of aging. Thus I don't expect heavy cognitive impact until it would be entirely indistinguishable from being old and perhaps senile anyway. Though I might think I see it sooner than that, no one will believe me. :-)

The myriad of other symptoms from trigeminal neuralgia to somatic nervous system involvement leading to an almost RSD-like illness to loss of pain sensation to loss of temperature sensation to dysesthesias anywhere to my Lhermitte's sign to leg spams and so on I expect to mostly keep doing what they do now, which is move in and out of my life depending on external forces, but always on the thin edge of being there because they always are there, and perhaps trending downward over time.

My prognosis is somewhere in those preceding five paragraphs, such as it is. Doubtlessly if I am talking to someone who wanted to dance with me or go places with me or sleep next to me or whatnot then I'd fill in more of the relevant answers to soup questions between me and her as they in fact become soup questions between us.

Most of this blog that was about my own symptoms was in fact not answers to soup questions at all though like I was saying I wanted to work out how to describe it for the sake of people for whom it might be could be or will be at some point soup questions.


Alasdair King on 16 Dec 2009 6:11 AM:

Very interesting post, thanks. And what a (slightly morbid) coincidence - I myself work on Assistive Technology - including some on-screen keyboards and some Dragon integration work - but I took to reading your blog because of the Unicode/I18N information. Slight cognitive dissonance when I saw this...

schrepfler on 20 Dec 2009 3:51 AM:

Hi Mitch, I follow you blog from time to time (we even had a discussion the the macedonian cyrillic keyboard about 4 years ago :) and this is the first time I realized you're suffering from MS. Keep on fighting, you're a great inspiration as your work touches so many people and your texts are always a please to read and discover new stuff.

Good luck!

Srgjan Srepfler


referenced by

2011/09/20 "Guh-guh-guh- that's not al folks!", by any means it would seem!

2010/03/21 My thoughts on the health care thing (given my life, my multiple sclerosis, and my iBot)

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