Tuesday, July 16, 2013

GBS Residual Effects- Who Knew?

The past two weeks have been stressful and frustrating.  A week ago Sunday I was getting ready for church, and practicing a song I was to play on the piano that day.  While I was playing I started to go numb in my hands, feet, and face.  I thought that was weird, and by the end of the day the numbness and tingling had moved up my arms and legs, and was feeling pretty intense.  I couldn't believe it!  Could the Guillaine-Barre Syndrome (GBS) be coming back?

I researched in online (of course, as I always do), and found that GBS doesn't recur often- only 3-5% of the time.   I knew I needed to figure out what was going on, though.  I skipped my Monday morning run, and was able to get in with my family doctor, hoping for a referral to a neurologist.  The doctor was very helpful and concerned, and he helped me get an appointment with a neurologist.  I wasn't able to get in for a few weeks, but felt reassured that I could get more immediate attention if I felt like the symptoms were getting worse.

The wait was an emotional roller coaster.  Some days I physically felt worse than others, and the whole time I wondered if I would end up in the hospital again.  I was unsure if I'd have the energy to teach my piano lessons or do the piano camp that I had planned for last week.  I decided to plow my way through it, and was physically exhausted by the end of the day.  It was stressful, but I made it.

My appointment with the neurologist was yesterday afternoon, and I was nervous going to it.  I don't trust doctors very much, and was worried I'd get an arrogant, cold doctor (that's how I think of specialists).  Thankfully that wasn't the case.  I saw Dr. Noah Kolb at a "U" clinic in Park City, and he was awesome.  Jimmy and I laughed, because it makes you feel old when the specialist is younger than you.

He was a nice guy, though.  Very thorough on the details as he took my history over the last year, and asking questions about my family's history of Charcot-Marie-Tooth Syndrome (a neurological disorder that runs on my dad's side of the family, that I don't have).

He did various strength tests, and he was surprised by how strong I was.  He asked if I worked out :). This was weird, considering that I feel weak, and my arms and legs kind of feel like I'm lifting logs as I move them. He also tested my feeling by poking me various places with a pin.  He also tested my reflexes, which were fine.  He had a tool kind of like a tuning fork that he made vibrate, had me close my eyes, then he held it on to my arms/leg to see how long I could feel it vibrate.  One time I could still feel after a long time, and he said that he couldn't even feel it anymore, so he was going to stop.  Again, weird if I was feeling numb.  How could I feel it so long?

In the end he said that I was just having a relapse of symptoms, but that it wasn't like a new bout with GBS.  He said that was somewhat common, for someone who had had GBS to have a recurrence of symptoms later, triggered by something.  He asked if I had been sick in the last month, and I had.  I had a bad cold toward the middle of June.  He said he thought that was the trigger.  I mentioned that I had run Ragnar, and wondered if that had been part of the problem, considering how I pushed myself to exhaustion in the heat.  He laughed and said no, that Ragnar was actually a great thing to have done.  YES!!!!!  Music to my ears.  The best part was that Jimmy was there to hear it.  He was convinced that Ragnar had caused my relapse, and I was worried my running days were over.  In fact, he said that I should try to get out & be active as soon as I felt able and it would be good for me.  YES!   The best news ever!

I asked him if my symptoms could be Multiple Sclerosis (MS), because some of them matched up.  He said no, because my symptoms were on both sides of the body, and MS usually occurs on one side, then works it's way around the body.  MORE good news!

He ended up scheduling me for a EMG next month, some sort of electrical test that will test my nerve pathways.  It's basically to give us a baseline for where I'm at right now, in case I start having these symptoms again later on.

When I got home I got on my computer and started researching (of course).  At first I still couldn't find much about what I was going through, except for info on those who get it again and have to be treated again.  I stumbled on the words "Residual Effects", and that was the key.  It turns out that many people who have GBS have recurring symptoms, months or years later after having no symptoms at all.  There isn't a lot of research on it because it's hard to study.  But there are more & more reports out there to show this is the case.

Articles I found show that it's not the muscles that get weak, but because the Axons in the nerves have been damaged.  The nerves have made repairs by branching out in different ways that before... many smaller branches, but they are weaker so can be damaged easier if overloaded.

A couple of very interesting things I found:  They said often people will muscle test strong, in fact stronger than normal because the muscle fibers have increased, due to the increased nerve fibers (or something like that.  Kind of hard to sift through the medical jargon).  The weakness is from the nerves not firing properly (thus my strength surprising the doctor).  It also said that people with relapse can have higher sensitivity (said technical terms that I don't quite understand, but thus my being able to feel that tuning fork vibration for so long).   I think I'll make a copy of the article I read and send it to the neurologist & see what he has to say about it.  Sounded spot on.

Hopefully I'll start to feel better soon, and get back to running.  The doctor mentioned that now that I know it's not a full blown relapse that will be serious, maybe I will quit worrying and it will help me get better sooner.  I pray that is the case.


Sunday, June 23, 2013

Good-bye Crazy Year. Onward & Upward!

So, it's now been a year since I got sick.  This anniversary has really made me think about everything, and count my blessings.  I know it's kind of weird, but I'm grateful for this trial and what I've learned from it.  Here's a list of some of the things I've learned:

1.  You can live as healthy as possible, eating all the "right foods", cutting out all things that are bad, and still get sick.  Really sick.  Nothing is guaranteed.  And?  I need to chill about the eating.  Balance is good.

2.  I've learned to think more seriously about the statistics that are thrown around.  For example, when they say only 1% experience this or that side effect, you think it will never happen to you.  Well, I was one of the .0001 % who get Guillaine-Barre Syndrome (GBS).  The small percent is real.

3.  I've learned to have more sympathy for others who have any sort of illness.  I hear their stories and I feel more sympathy & compassion than I would have before.  I think this is part of the Lord's plan as we go through trials-  to experience something and become more empathetic.

4.  I've learned that doctors don't know everything, and sometimes you need to go with your instincts.  If I hadn't gotten treatment when I did, I could have gotten to the point of paralysis and recovery could have been so much worse.

5.  I've learned that my love for researching things on the computer can really come in handy (it's how I figured out my symptoms of numb hands, feet, and lips were probably GBS).

6.  I've learned that the psychological healing can take longer than the physical healing.  Until recently I haven't been able to go back to super healthy eating.  The thought of it would give me major anxiety.  Last week, though, for some reason I was able to wrap my head around going sugar-free again, and I've been fine with it.  In fact, it's been kind of easy.  It doesn't take any extra work to take something away, so I figure it's a great start.  I've lost a couple of pounds... we'll see if it's lasting or temporary.

7.  I've learned that going back to eating sugar & gluten can make you gain the weight back... and fast.  I gained back the 25 I lost plus 5 more.  Frustrating, but humbling.  I'm hopeful that sugar-free eating will help me get back to a healthier weight.

8.  I've learned more appreciation for really good friends, who have stuck with me through my recovery.  They really helped me out, especially as I was going through the worst of it last year.  This past weekend we were able to run the Wasatch Back Ragnar Relay together as a team, and it was a lot of fun.  Love these girls!

9.  I've learned that some people in the "whole foods" world are extreme, and are living in denial.  I feel they can be as bad as those "evil"  people they preach against.  That's been part of the psychological struggle for me- knowing who to trust.   And getting over the hurt for feeling betrayed.

10.  I've learned that I can be strong and healthy, even when I'm 30 pounds heavier than I want to be.  In the  relay I did 3 legs:  4.8 miles, 7.7 miles, and 4 miles straight up a mountainside.  I felt great!  I could only speed walk the hill, but I still went pretty fast.  The reason I'm putting this one is that I'm learning to love my body at any shape, not just at the ideal weight.  I still want to lose weight again, mind you, but I'm learning to accept myself more.

I plan to start writing in my blog more, and document the trip back.

Thursday, March 14, 2013

Wow! I can Actually Post? Unfrozen.

I haven't posted for a very long time because for some reason my account was blocked.  I have no idea why, and tried for a month to get it figured out, with no luck.  Then life goes on, and out of sight, out of mind. 

It's hard to believe it's been 8 months since I got sick with Campylobacter, and then got Guillaine-Barre Syndrome.  (See my last entry).  I've been symptom free since December, and am still trying to regain the strength that I lost.  I was at such a good place physically before my illness, then BOOM.  Crash.  I experienced some humble pie and was brought pretty much to 0 (0 being an inactive person, 10 being very fit and active).

I was nervous to push my exercise too hard, knowing that my nerves were repairing.  I had read that you could damage other muscle cells by over compensating with the nerves that could actually fire.  Now I feel I'm pretty much back to normal, but have to get the motivation to get back at it.  I have been able to start running again, but have been keeping it very simple over the winter, running 3 times a week, 3-6 miles each time.  I'm ready to push it to 4 days a week, but running is a lot harder now because I've gained back the weight that I had lost.  I started drinking pasteurized milk again, and while in the hospital I had some sugar, and it was downhill from there.  I still mostly avoid wheat, but do eat bread occasionally. 

I guess I need to change my blog title.  Maybe to "Jan Moderation in All Things", or "The Lord is really the one in Charge, Even if You Think You Can Control Your Life".  After being sick I got really angry at the whole "holistic nutrition" world.  Some told me that there was "no way it could've been the milk".  That I was just being "the victim", and that I should toughen up.  Seriously?  Here they get mad at all things government , and act like we're being duped and scammed, but then they treat people who question their thoughts the same way!  I still prefer a whole foods diet, but  take everything I read with a grain of salt.  People get so worked up about things.  But really, there are more pressing matters in this world, and I've decided food is one matter I will do with moderation.  I love being healthy, and still do some of the things I've written about in my blog, but I'm not going to go crazy over it, and let it over power my life.  I'm grateful to my Heavenly Father for letting have this experience, to be humbled, and see that there are more important things in life to put my energy toward.