St Croix River Road Ramblings

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Thursday, January 9, 2014

Myasthenia Gravis 18 months later

Remission continues for me.  A fellow patient isn't so lucky.  

May 22, 2012, I started to have double vision on top of some other physical problems (extreme tiredness) and was diagnosed at Mayo Clinic as having Myasthenia Gravis (MG).

MG is where one's immune system churns out antibodies that attack, block and destroy the connection between nerves and voluntary muscles.  The primary result is weakness and inability to do physical things and eventual death without treatment.  It is chronic (not curable, but treatable).  

After a hospitalization for difficulty breathing (yes, breathing muscles are voluntary), I began treatment to suppress my immune system and in about 6 months most of my MG symptoms were gone, replaced by prednisone side effects.  So, the next step was determining the minimum level of prednisone needed to rid myself of most MG symptoms while having the fewest of prednisone side-effects (pretty terrible).  

In tapering the prednisone from extremely high doses to zero over many months, I finally got off of it altogether last April, and now for 9 months have been symptom free without meds -- remission it is called.  For most folks with MG, it will likely to return again sometime in the future.   About 15% of people do get a long-term remission that may last months, years and decades.  

I am optimistic MG is gone permanently, although the statistics are not in my favor.  I had MG for many years before it was diagnosed--my doctors couldn't figure out why I was so easily fatigued and attributed it to being out-of-shape.  However, as I couldn't really do much active without fatigue and getting immediately out-of-breath, I couldn't get into shape. 

I attributed this to some personal moral failing--I just was too lazy, or lacked self discipline, and got to the point where I accepted that I was just lacking in this area--my fault.  My doctors reinforced this idea I was at fault as my lifestyle was not good, or I would be healthy, as there was nothing wrong with me they could find out.

Undiagnosed, blamed for my illness, and having difficulties doing the things I liked to do, life was pretty bleak.  

When, in May 2012, when my eyelid refused to stay open and I got severe double vision, the doctors were motivated to run some additional tests that showed I had MG--blood levels showed bad antibodies.  

Breathing a sigh of relief that there was a physical cause for my problems, not just innate laziness and lack of will power, I began the treatment--which took almost 6 months to get me fully mobile and functional so I could walk around and breath all at the same time. 

 MG had destroyed about 80% of my muscle receptors by that time (however they regenerate when the antibody attack is lifted).  

During the first 6 months, when things were not improving, I contemplated ending things, however, one of the support groups that kept me going was at, the MG forum where people like me discussed treatments, outcomes, and railed about our years of mistreatment in the medical field.    They counseled patience and along with the stories of misery, were occasional stories of success and improvement (people who got healthy left the forum, those who didn't stayed there--so one gets a skewed picture of things at times). 

I haven't really thought about my MG for many months as I am truly in remission, and I don't want to think about it returning, but a few days ago, one of my MG fellow sufferers got a shock, that brought MG to the forefront. 

She is a 50 year old woman, a runner who ate right, lived right, and did all the right things, but about 18 months ago too was diagnosed with MG.  She chronicled her path through MG online, writing wittily of her battle to keep a semblance of regular life as a mother, full time worker and athelete.  

  I have never met her other than through her posts on the MG forum.  She took much the same treatments as I did, but her path has been to more and more problems. Her neurologist and other doctors (at the big U in MN) seemed to have no solutions for her problem and her physical ability dwindled.  She pushed her many doctors hard, and switched a few times when she found MDs who would not take her seriously.  

She is still pushing, but now they take her seriously, in the hospital, in a fight for her life from failure to diagnose cancer in addition to MG.   

In January, having leg pain, her medical team imaged for blood clots and found, incidentally, she has cancer that has spread to several organs, possibly starting in the pancreas (probably the worst possible cancer when found at her stage IV level--spread to several organs). 

She had been under the "highest quality" treatment for 18 months, at a premier medical institution and only now, when it has spread to several organs, was cancer diagnosed--and only accidentally as it showed up on a scan for blood clots.  Why so long to find this out? Who messed up?  Her future is fraught with peril as the cancer is spread, so whose fault is it for missing this so long?