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Old 05-29-2012, 12:10 PM
Anacrusis Anacrusis is offline
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Join Date: Apr 2012
Posts: 478
8 yr Member
Anacrusis Anacrusis is offline
Member
 
Join Date: Apr 2012
Posts: 478
8 yr Member
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Hello Everybody….

I´m writing my story. It´s a long one, but it´s my only one ………

Before 2006, that person biking 50 km without needing to train, playing volleyball on a team, river rafting the rapids was me!! I was a great gymnast as a kid and could walk on my hands across the entire playground all in one stretch!!

I´m not really sure when it started, could have been pregnancy 2006 or a little later in 2008 when I detected the start of a very neatly fluctuating and progressive 4 year curve of fatigable muscle weakness.

By the time it had reached its peak in 2011, myasthenic weakness appeared to have two overlapping layers:
1) One that seemed to have a life of its own (general limb weakness)
2) Another that I could actually control (bulbar weakness)

The general limb weakness got WAY out of control in the end, starting in the deltoids and spreading progressively but slowly to the arms, hands, neck, trunk, thighs. And over a 4 year period I would notice a new action that I had difficulty performing with a certain set of muscles with each new flare up. 9 different antibiotics in 2009 did not help matters much. By April 2011 muscles would fatigue within 3 seconds of a repetitive activity.

I remember……….

• Almost beginning to drown when the muscles used for swimming just ´gave up´ on me.
• Feeling myasthenic weakness just waving goodbye, unable to finish a round of applause, problems writing and not being able to strum a guitar to the end of a short children´s song. A small rest of a few seconds would help. Opening jars and packets of chips was becoming virtually impossible.
• Having to lay on the floor many times to rejuvenate trunk muscles to be able to stand or just sit up again. By 4.30 p.m. enjoying my meal as if it was my last one because at any minute the chewing would go into slow motion mode, my hands would get weak cutting the food and I would start falling into my dinner plate by the end of the meal!! One afternoon weak trunk muscles made me sit down in the middle of the street!
• By April 2011 it was almost impossible to hold a telephone to my ear for more than 30 seconds, tie a shoelace, squeeze toothpaste, turn the pages of a newspaper, turn a key in a lock.
• I would put my makeup on in the mornings with my elbows pressed into my stomach and brush my hair the same way!
• The heart was pumping furiously and my face was sweating and hand shaking whilst simply passing the salt across the table.
• I noticed some very interesting changes in metabolism during what I call ……´my daily climbs up Mount Everest´….
• Eventually I lost the anacrusis in all movement (that little upbeat before initiating a muscle action)…You don´t know what it is until you´ve lost it.

One year of milder bulbar weakness came in January 2011 and was alleviated 2 weeks after the withdrawal of long term sedative use in January 2012.

I remember ………

• Reading a bedtime story to my child and finding out by accident that changing to another language I could actually articulate more easily and hold off my evening bouts of dysarthia by a few very valuable extra minutes………
• Having a single grain of rice stuck in the esophagus for 20 minutes. I figured that in the end it would either come up/go down or at some point disintegrate…..
• Choking on small amounts of liquids …even the spray from peeling an orange or the vapor in the shower sometimes started a choking reflex. Juice from food would gush down prematurely and a lazy and unpredictable epiglottis simply forgot to do its job properly.
• Being out of breath repeating a single sentence or even getting to the end of the first sentence was enough of a task in itself. Evening breathing ´in´ problems would sometimes last 4 hours.
• Earlier masseter muscle weakness whilst chewing was not all that prominent and eventually ´transferred´ into long term intermittent weakness in the superhyoid muscle area.
• Both voice and eyes would continuously go in and out of focus especially after heat exposure and would be relieved on contact with cold environments.

After the last and worst 3 month flare up which escalated to its worst peak ever, a sudden and unmistakable remission occurred on May 5th 2011. It came like an avalanche! Everyone noticed. It felt like a poison retreating over the course of 5 days. For example, On May 5th I could not lift a pillow without being out of breath however by May 9th I could lift 10 kilos, and most of the limb muscle weakness symptoms resolved 90% within those 5 days and without medication for MG. I remember staring at my hands over and over again wondering what I had done differently to make them work normally again (some actions like grasping took many additional months to strengthen)
The overlapping bulbar symptoms on the other hand resolved one year later in January 2012 on withdrawal of small sedative doses and then returned again with repeated challenge doses.

The joys of ´remission´........

I would dance just because I could and I would squeak like a little child…. ´Look at me everyone!!! I can zip, lift and swing my own rucksack onto my back and even carry it myself!´….`I can eat and cut my own food again!!! I can sit and eat my dinner without falling over into my dinner plate ☺ ....I can lift my arm to insert the visa card AND then hold it up long enough to press the code at the same time without taking a rest first!!!´The brain became extremely energetic, noticing and appreciating every single ´relearned´ muscle action during the next few months.
I never had medication and all the tests I took were negative (no SFEMG) A neurophysiologist and researcher in MG believed my story, and says I´m possibly in a remission lasting 2 years and thinks the blood test that I need simply hasn´t been developed yet. (I also initially had CFS which overlapped the myasthenic symptoms but of course was very different) Can a drug free spontaneous myasthenic remission without thyectomy provide 100% remission? Since I never had any positive tests then I will wisely keep my theory to myself!!!

During last year especially the going was getting gradually tougher & tougher. By inventing survival techniques my mind was kept busy in the same way that my body was physically occupied with all the myasthenic symptoms.
Those years of myasthenia were like an expedition up Mount Everest but without help and without the right kind of equipment.........
I´m not a sad or lonely person but this has got to be one of the saddest and loneliest journey I have ever made…..
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