Tuesday, November 27, 2012

symptoms

I once heard MS described as a thousand head monster.  That is because it is a disease of the brain and can attack anywhere and symptoms and disabilities can affect any part of brain functioniung. 
My first symptom. as I said before, was going deaf in one ear.  Since I had no idea what was going on and figured it was an ear infection or just a serious block, I did one of the worst things I could do.  I actually was at a conference in Madison, Wisconsin with my friend Pam.  The hotel we were staying had wonderful facilities including a pool and sauna.  We blithely went into the sauna and heated ourselves up over a good length of time.  We then went and got directly into the pool.  I complained to her at the time that  the cold water was sort of painful to me after the sauna.  I just figured that was sort of odd but fairly normal.  It was after that then I began to have more symptoms.  I remember being dizzy all the time (and it wasn't because I am blonde!)  When the double vision started I knew something was pretty seriously wrong.
Looking back after the diagnosis, I think I was having a lot of symptoms even before I lost hearing in my ear (I got it back by the way- hearing that is).
I was diagnosed about a year after my son was born.  During pregnancy the immune system is heightened for everyone.  So sometimes, in people with overachieving immune systems who are prone to MS, will have their first exacerbation following a pregnancy.  After Eli was born, I noticed some numbness in my leg.  It also began to feel that my fingers were clumsy when I was trying to write, and my handwriting, never stellar, started to be fairly illegible.  The dizziness also started before the deafness.
When I heated myself up in the sauna, I increased the symptoms.  In the days before more sophisticated testing, one of the ways they diagnosed MS was to put the patient in very hot water to see if they got worse!  So I unwittingly ran a diagnostic test for myself when I took a sauna!
After I was diagnosed and received a heavy-duty doses of steroids, my hearing mostly came back and I was normally functioning for a while.  As a young mother I did not want to take a disease altering medications because I knew that they were abortificent and that I wouldn't be able to have any more kids.
As it happened, the disease won out.  I had at least two exacerbations during the first year with the primary symptom being inability to walk.  So I caved and went on Avonex.
I will tell you some more about the medications tomorrow.
Since my diagnosis 18 years ago, I have remained on my feet, albeit with a cane.  I have a very minor hearing loss in my right ear.  I don't notice it until I am trying talk on the phone.  My fingers are very numb all the time.  I am very easily fatigued, but sleeping does not necessarily helped plus I sleep terribly.  My very least favorites symptom is leakage!  I do not like to expound on that last one.  Suffice it to say that Depends are my friends!
That's enough for today.  I'll be back tomorrow with another episode of life on MS

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