Monday, August 27, 2012

Well, it's been awhile!  I was just reading back through some of my early posts and I realized how helpful it is to have some documentation of past flairs.  I also want to begin documenting my eating habits and instances of high stress to see a correlation between them and how my body feels.

I truly believe that food plays a huge role in the progression of ms.  I don't believe that it can cure us from this disease, but I do believe that it can slow it's progression.  I have been eating healthy (for the most part- it hasn't been perfect) for the past year or so, but I feel like I can't find what works best for my body.  Currently I am gluten, dairy and legume free (following a combination of Swank and Jelinek).  I do eat lean chicken breast and I try to eat fish, but have to get better at that.

I wrote in my last post (Sept 2011) that I was getting ready to start Gilenya.  I did start it at the end of Sept with great results.  I started the med with no heart or blood pressure issues.  I had been suffering "tired" legs and the week after I began the med my legs got achy and painful.  The following week the pain was gone and so was the tiredness!  It was amazing.  I felt "normal" again... a feeling I hasn't consistently felt in a long while...

Over the next 10 months things were fairly uneventful.  I had little things here and there (minor tingling, minor light-headedness, quick episodes of tired legs) as well a a couple months of hip pain.  Nothing major....

July 2011: I over did it.  I was a hot and humid summer day and I physically over did it.  I did a lot of walking and standing around in the hot sun.  Beginning the next day I started feeling the tiredness in my legs and the overall "wet noodle" feeling I sometimes get.  This along with tingling and slight numbing in my fingers and toes, tingling in my lower legs, slight balance issues (only to be felt if I close my eyes and try and stand still) and the feeling that I was garbling some words stayed with me through the summer.

I saw my ms doc in mid August and he ordered an MRI (the last one I got in Sept 2011 showed things were stable).  The new one showed one new small lesion and slight activity.  He ordered two days of Solu-medrol which I got Aug 16 & 17.  I felt a bit better that second day of the infusions but beginning Saturday I started of week of weaker legs, more tingling, and total exhaustion.  It was almost like the ms was worse.

Now, the big question of the day.  How long does it take the Solu-medrol to work.  Well, I have looked into this extensively and have depends.  It seems everyone is different and reacts to the med differently.  Also, people tend to react to each treatment differently.  Great.  The only thing about the treatments I got last year was that the following week I did feel worse.  I looking back in this blog it also seems that it took several weeks for things to quiet down.  I'm not feeling patient these days, as school starts back up next week and I was really hoping to have all of this "put to bed" before beginning the new school year.

I also always wonder when to call the doctor.  If I can avoid a second round of IVSM I'd really like to.  It makes me feel like total crap.  On the other hand, if I do need it, I'd like to get it this week before going back to school.  Am I giving it enough time to work?  If everyone is different how do we know?  Maybe I'll give it today and call tomorrow if I'm not feeling better...

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