Wednesday, March 2, 2011

And, back on topic-what is MS and why should I care?

First, from what I've heard, the "Dark Side" post from a few days ago has been kind of misunderstood.  What I'm trying to do in this blog is simply capture and share my experiences with MS.  I'm not whining when I should be fighting, etc.-  What bothers me is that I was very sick for a very long time and it was missed, and because it was missed it got really, really bad.  I hope that this helps someone get insight into their symptoms and it gets them to the doctor earlier, armed with the info they need.  Frankly, when this kind of thing happens to you it feels like you're losing your mind, because you are.  It can take a long time to get a diagnosis, and there's still very little information around, outside of clinical documents that don't really tell you anything.

The "Dark Side" entry was a bad episode-and with this disease they can come out of nowhere.  Bad exacerbations are usually a combination of psychological and physical problems.   Here's why:

Multiple Sclerosis is the condition caused when the immune system mistakenly attacks the brain and central nervous system.  Scar tissue forms on the damaged nerves, causing the central nervous system to short out.  It's like having stripped wiring.  Damage can occur anywhere, but is often visible in the brain and spinal cord with an MRI.  Spinal fluid is also tested, and visual tests are performed to get to a final diagnosis.

With the vast majority of people, MS will manifest itself in "bad" and "good" spells, which can last months at a time.  This is relapsing/remitting MS.  With this form of the disease (or more likely the disease in this early stage) there are many treatment options, and more progress is made daily.   The relapses can be devastating, and the unpredictable "up/down" life is hard-but many patients still work full time jobs and manage the disease with a combination of medications and physical therapies.  Many employers are now more understanding with the downside of the disease also.  New drug therapies have been developed that may actually arrest the progress of the disease in the relapsing/remitting stage.  

More rarely a person will develop progressive MS- this is MS with a steady decline in function and acceleration of symptoms-no remissions. There are no known treatments for this condition/stage, though there are some experimental options and some drugs that show anecdotal and debatable results.  I still can't get a clear answer if this is because of relapsing/remitting left untreated for too long, or if this is an entirely different condition.  In fact, everything I just said regarding the disease is the subject of spirited debate.

What happens?  Here's the tricky part.  Onsets of MS are sometimes obvious:  if you wake up blind, the doctor will check for it.  Other times MS can manifest itself with strange and subtle recurring symptoms, recurring periods of illness,  or psychological issues.  Other conditions can mask the presence of MS.

I had very subtle symptoms over years that in hindsight make sense, but didn't add up to a lot of concern.  When things did start getting more serious, my MS was masked by a very bad spinal injury caused by a congenital arthritic condition.  The story:  I had been chasing problems with numbness/tingling in my hands for many, many years.  I went to sports guys, many doctors, and even a hand specialist.  Everyone said it was carpal tunnel, though nothing resolved the issue.  Finally, after nearly 20 years, a doctor tested my nerve connections and the ball started rolling.  They found a horrible compression in my spinal column-- down to 1/8th in the C spine.  They fused it.

No doctor  is going to find the cause of a problem (numbness) and keep on looking for other causes for the same problem.  I was blessed that on looking at my surgical films a very talented doctor told me to focus on recovering from my spinal issues, then talk to my primary about "A disease with initials."  That's all he could say.  I had to do the rest on my own with the internet. 

And then I had to "sell" my primary- who had been taught that people with MS go blind, always.  Getting him to  move forward literally took me waiting for a very bad episode, then heading to his office in "full twitch."  It caused a general panic at his office-where they're really not used to dealing with odds-defying, unusual diseases.  An MRI revealed advanced demilination(sp?).   The disease was obvious and moderately advanced.

I then had visual testing done and failed spectacularly.  I declined the spinal tap because of my recent spinal surgery.  (It has been done since, yup-positive.)  Then commenced a year or so of doctors accusing me of not having MS, re-starting the process from square one, and coming to the same conclusions.  I had the primary doctor at the "MS Center" in Philadelphia look at me skeptically from top to bottom, refuse to acknowledge my MRIs or test results, then tell me it was high blood pressure.  He told me to come back in a year.   I had a new neurologist the next week.  Incidentally, I've never had high blood pressure-other than the high blood pressure he caused me. 

I'm now a patient of one of the best neurologists in my state, and the sad truth is that there isn't a dang thing she can do.  I've tried some experimental therapies that I'll get into in my next post-nothing has worked, and it was all very risky.  On my last appointment she reviewed my films, kind of shrugged and said "OK, six months?"   I am seeing her next week, because of the "Dark Side" episode.  

Anyway, it's my hope that I can help someone avoid this nonsense by knowing about the illness, rare as it is, and getting right treatment as early as possible.