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    Early last September I published this diary, detailing the mysterious affliction that had beset me a week and a half earlier and my efforts to receive medical care as an uninsured individual in pre ACA America.
     It’s a lengthy diary and you needn’t read it, as I’ll give you a (somewhat) shorter summary.
     A year ago today, in the mid-afternoon, I experienced a sudden loss of strength in all four limbs.  The change was immediate, and completely bilateral.  Had it occurred only on one side I would have been sure I was having a stroke.
     The sensation was one of muscle fatigue, as you might feel after doing a set of curls until you couldn’t lift your arms anymore.
     The following morning when I awoke everything was back to normal.  Little did I know it was the last time I would feel normal.


You must enter an Intro for your Diary Entry between 300 and 1150 characters long (that's approximately 50-175 words without any html or formatting markup).

    By the time I walked from my bedroom to the kitchen, the problem returned.  Until this point I had thought that what I was experiencing was merely the sensation of a loss of strength, but nearly dropping a pitcher of water and barely being able to carry a couple of garbage cans out to the road convinced me that it was genuine weakness.
     Within a couple of hours this weakness was accompanied by tremendous pain down both arms and both legs, plus the base of my neck.  I can only describe this pain as feeling like a toothache in my limbs and neck.
     In addition to the weakness and pain there was a pronounced ataxia...a loss of motor control.  Typing became very difficult (I’m normally an excellent typist) and just getting the mouse to move where I wanted it to was difficult.  My walking was also unsteady, and while I didn’t fall, I came close a couple of times.  There was no dizziness.
     The following day I was in so much pain, and was so concerned, that I went to the ER.  They ran a basic metabolic panel, which was normal, and did nothing else.  The ER doc said that since my breathing and swallowing did not seem to be affected that my life was not in imminent danger.  
     The doctor said that the onset of the malady was so sudden that he felt it was unlikely to be a host of familiar ailments, such as MS, ALS, any of the dystrophies, etc.  He said that Guillain Barre syndrome isn’t accompanied by pain.
     I was told that I needed to see a neurologist, and that I should also follow up with my regular MD, who I had been seeing twice a year by paying out of pocket.
     Before leaving the ER I asked the doctor if the statin that I had been taking for years to control my cholesterol might be the cause, as I knew statins had been linked to muscle pain and weakness.  He said that statins only have that effect, when they do have that effect, shortly after starting them.  Plus, he said, my bloodwork did not indicate the sort of muscle involvement that would be seen if the statin were the culprit.
     I saw my regular MD two days later, and he was of no help, except to also say that I needed to see a neurologist.  He also said that the statin was not likely to be the cause, citing the same reasons given by the ER doctor.
     I had never been so frightened in my life.  At the rate the  symptoms were progressing I feared I’d be confined to a wheelchair within a matter of weeks if not days.
     A few days later I published the diary as a plea for help, and this community responded in a way that I can only describe as breathtaking.  The outpouring of suggestions, resources, and simple good will was wonderful.
     A few days later I learned that the watery, acrid Chobani yogurt I’d eaten a couple of days before I became ill was contaminated by mould, and that people had “become sick” from eating it.  I couldn’t help wonder if it was responsible for my symptoms, and got nowhere with the manufacturer in getting them to identify the nature of the mold (although they did eventually release this information,) or exactly what sort of symptoms other people had experienced by eating the tainted product.  I was however contacted twice by a lawyer representing Chobani asking me how I was, and if I’d like some coupons for free yogurt.  I declined.
     I began a lengthy and frustrating process of jumping through numerous hoops, said hoops being held by the most extraordinarily incompetent people, that ultimately led to me being granted a period of charity care by a large medical center in suburban Chicago, for which I remain grateful.
     By the time I saw a neurologist the progression of my malady had slowed greatly.  If I could have viewed it as a disinterested observer I would have found it fascinating.  I could sit at my desk, doing no more than moving my computer mouse a few inches in either direction, and within a few minutes the pain would appear down my right arm.  My ability to move the mouse would drop to near zero, and on one occasion I was unable to even close my hand enough to grip the mouse.
     But what I found amazing is that while this minor movement of my right arm triggered the pain in that limb, my other arm, both legs, and my neck would all immediately manifest the same pain, even though they had been motionless.  At times I found it difficult to fix my gaze on a particular point, or to focus my thoughts.  These “spacey spells” as I called them would last only a few minutes if I remained motionless, and eventually the pain would subside as well.
     My work requires me to carry items that vary in weight from a couple of pounds to perhaps fifteen pounds.  It became difficult to do so, and I often had to set things down and rest a bit before I could continue.
     The neurologist ordered a battery of tests.  Once again blood work was all normal.  No diabetes.  The neurologist echoed the other two doctors in saying that the problem, whatever it was, was not caused by the statin.  But by then I’d long since stopped taking it on my own volition.
     I underwent a series of MRIs and MRAs of my head and neck.  No tumors, no ruptures, no blood vessels bulging against nerves.  I’d since learned there are such things as bilateral strokes, but I hadn’t had one.  Everything was normal.
    I was sure the EMG would be enlightening.  Trying to get my hands to do what I wanted was like having a bad connection on the phone where every third syllable was dropped.  My brain said “move here” and my hands said “What was that you said?”  But the EMGs were within normal range.
     Following a several minutes long loss of consciousness in a restaurant I even had a sleep study ordered.  It showed some positional apnea, for which I still must be fitted for a C-PAP machine.  But while the neurologist said that poor quality sleep would exacerbate the symptoms of any illness, the apnea was in no way responsible for the weakness, pain, and ataxia.
     I only got to see the neurologist three times before my period of charity care lapsed.  I never received a diagnosis from him.   
     I began to adapt to the “new normal.”  In the car, when reaching to change the radio or heater settings my hand always missed, coming in several inches lower than my target.  Similarly, I frequently knocked stuff over when moving my arm over an object.  It was as if I had weights on my wrists, and my arms never went as far up as I felt my brain was telling them to go.  Eventually I began to naturally compensate for this, and my radio changing accuracy improved, although the TV remote felt like a brick in my hand.
     For the first few weeks after the onset I ate very little.  I was sick with worry, and it felt like there were knots in my stomach.  By the time the deterioration plateaued I’d lost several pounds and even though my appetite slowly returned I decided to use this “head start” and take off the excess weight I’d been carrying for years.  I cut way back on my caloric intake.
     I also began doing some mild exercising.  I used economy sized bottles of laundry detergent as my free weights.  I remain astounded at how quickly I built muscle mass.  I have never achieved so much muscle growth with so little effort, and can’t help but wonder if since my muscles seem to be fatiguing prematurely this isn’t also causing them to rebuild and increase in size with far less effort than would normally be required.
     While the increase in mass was amazing, any increase in strength was comparatively minor.  I find it supremely ironic that, aesthetically speaking, I now have the best body I’ve ever had in my life, even if it leaves a lot to be desired functionally.
     Fortunately I live in a state with a Democratic governor and a Democratic legislature, and under the ACA I now qualify for Medicaid.  I applied in October, eventually being approved in February of this year.
     Barack Obama said that if I liked my doctor I could keep him.  Well, he didn’t lie to me, because I did not like my doctor and I wasn’t at all upset to learn he did not accept Medicaid.  Using the state’s website I signed up with a primary care doctor affiliated with the same medical center that had granted me the charity care.  His office is only five minutes away.
     By the time I saw my new doctor for my initial visit I’d lost over 50 pounds.  He spent his time with me, and ordered an EKG, some more blood work, and due to a long-standing heart murmur, an echo doppler.
     It is the opinion of this doctor that my condition is caused by the statin I was on.  When I told him that three other doctors had said that for that to be true the symptoms would have had to appear shortly after starting the statin he said “They’re wrong.”  When I told him that they also said I’d have certain markers in my blood work if the statin was at fault he said “Usually, but not always.”
     Having stopped the statin many months earlier, and having lost a significant amount of weight in the interim, the doctor and I both eagerly awaited the results of my cholesterol test.  Turns out my cholesterol is freakin’ great.  No need to go back on a statin.  It would appear that whole “diet and exercise” schtick really works.  Although popping a pill is certainly easier.
     So now, a year to the date since the onset of my mystery malady, where am I at?
     I still remain quite uncertain that I’ve received a correct diagnosis.  The votes are 3 doctors against 1 that it’s the statin.  In my gut I can’t help but wonder if I’ve got some bizarre, extremely rare condition that will only be diagnosed if I wind up hospitalized with Dr. House tending to me.
     I would estimate that I have regained 60% of the strength I lost.  I rarely have difficulty carrying items at work.  It no longer feels that I’ve carried the garbage cans five blocks when I’ve only carried them sixty feet.
     My ataxia has not improved as much.  I have regained perhaps 40% of the motor control that I lost.  Some days are worse than others.  There are times that I feel as if I am staggering around like a drunken sailor.  I doubt that unknowing observers feel I look that bad.  They probably just assume that I meant to veer off in that direction. But I know better.
     Simple tasks like finding the appropriate bills to take out of my wallet, finding and grasping the particular key I want on my key ring, and at times even dialing my cellphone can be frustratingly difficult.  Most days my typing is almost as good as it was before.
     The biggest improvement has been the pain.  While I still have the fibromyalgia pain I’ve had for eighteen years, the horrible toothache like pain is mostly a memory.  On rare occasions a lot of arm movement can bring it back, in those limbs only, but only to a mild degree which vanishes as soon as I keep still for a moment.  The "spacey spells" are gone. I am very grateful for all of this.
     I am also grateful for this community.  Several individuals have kept in touch with me via private messages, offering suggestions and encouragement.  Just recently a Kossack messaged me a link to an article stating that Chobani had understated the seriousness of the mould that had contaminated their yogurt.  But everything I’ve been able to find seems to indicate that its effects were nausea and diarrhea.  I’ve been unable to find anything linking it to weakness and ataxia.
     And I am very, very grateful for the Affordable Care Act, the President who muscled it into existence, shortcomings and all, and the Democrats who passed it into law.  Thanks to them I now have health insurance.  Should my symptoms flare up again I can immediately seek care.  
     Some day, if I once again have private insurance as I hope to, this pre-existing condition, mysterious though it may be, will not keep me from obtaining coverage.  And I will not be charged more for that coverage than any other non-smoker my age in my area.  And in the words of Joe Biden, to me, that is a big fucking deal.

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