Thursday, June 23, 2011

How I Met The Monster.....Conclusion

A year ago this week my life would change forever

Where we left off; As I said yesterday all my tests were coming back negative or with normal results. This only added to the stress and frustration I was feeling.  I was at my wits end.  I continued to pray, I prayed for the doctor's to discover what was wrong with me, I prayed for the strength to accept what would come my way, I prayed that my life would be spared.  But I never bargained with God, it's not my way.  I don't make promises for good things to come my way.  It's always been my belief that if I led a good life I would be given the strength to live with whatever came my way.

My doctors and neurologist were very busy reviewing all of the tests the had done and what they were considering next.  I knew God was looking over my shoulder, I was starting to feel better.  I was finally allowed out of bed after 4 days, but only to go to the toilet!   After three and a half days things began to turn the corner.  They thought they had found the problem.  A wave of relief came over me!  After reviewing all the labs and other test results the doctors discovered I had a seriously low Vitamin B12 level.  I was caught by surprise, who would have thought that a low B12 level could cause so many problems.  It turns out that Vit B12 is essential for your nerves and muscles to work properlyI was started on a program to increase my B12 level, I would have to inject myself with the vitamin daily for several weeks, then weekly and then monthly, along with an oral supplement for the rest of my life.  This was a whole lot better than a neuro-muscular disease.  I offered a pray of thanks, again I had been blessed.  Some other labs drawn, it was determined that I had an absorption problem.  The doctor and neurologist said usually the neurological problems I was experiencing go away entirely.  Some would take longer than others, some might never go away, only time would tell.  It was agreed that I could go home after my B12 level increased.  I was discharged two days later, feeling like a new person.    I had to follow up with my doctor and neurologist in a few days. Any other testing could be done as an out-patient.

My first visit with my doctor went pretty well, but there was some concern that I still had so much weakness in my arms and legs.  I had to continue with the B12 regimen until I saw my neurologist a few days later.  The next day I had another episode of almost paralyzing weakness.  I was filled with fear all over again!  I found comfort in the fact that I was going to see the neurologist in the morning.  I had no idea what to expect form this visit.  We talked at length about the B12 issue and the problems that it could cause, and then he said it  "I want to test you for Myasthenia" my heart sank, I could feel the tears welling up in my eyes.  I thought I had escaped a terrible fate.  He was so kind and reassuring, he said "hopefully this is the last time we will ever have to talk about this."  He wanted me to have Acetylcholine antibody tests drawn ASAP, an EMG was scheduled at his office for the next week. We would talk about the results then.  I went to the lab on my way home.  When I had the strength I searched the internet for anything I could about Myasthenia Gravis.  I was now more afraid than before.  I had no idea how bad this disease could be.  When I look back now I think to myself, our family has never done anything small. Even with this I couldn't just have a droopy eyelid, no not me, I had to be almost paralyzed from weakness.

Now was I to become one of the many who struggled for years to get a diagnosis or would I be spared the same fate.  Only time would tell.  Off we went to for my next appointment, and guess what my antibody tests were NEGATIVE!!  Dr. B. did my EMG, that was normal other than finding out I had Carpal Tunnel Syndrome.  No surprise there, I spent much of my day on a computer at work and am an avid crocheter.  Both are notorious for causing repetitive motion injuries.  The next step would be to have the MuSk antibody test done.  Because of the expense and nature of the test I would need prior authorization.  It would take about four to six weeks for their decision.  In the mean time we would see how much the B12 regimen helped the weakness.      Then the letter arrived from my insurance company, as Gomer Pyle says "Surprise, Surprise, Surprise!"  The insurance company didn't grant approval for the test, they didn't feel there was strong enough clinical evidence!!  I was stunned to say the least, I couldn't call my neuro fast enough, he was floored.  By now I was hysterical, he tried to reassure me, then the final blow came.  He said with or without the test I would recommend the same thing. I want to start you on Mestinon.  All I could think about were the horrible side effects I'd read about.  I didn't want to pee myself or drool all over or whatever else could happen.  I was not taking any medicine until I knew for sure that I had Myasthenia.  So then off I went to Philadelphia for a Single Fiber EMG, and yes that was negative as well!  I thought I was on the road to nowhere, everything was normal or negative, I was so discouraged at this point.  God bless my neurologist he has the patience of a saint, he is such a kind soul.  I know God was looking after me when that angel of a doctor came to my hospital room that first day.  I was now a member of the sero-negative Myasthenia Gravis fraternity.  A group I really didn't want to join, but here I am.  I began Mestinon at 30 mg 3x daily.  No side effects, thank you God!  It helped some, but not enough,  the dose was increased to 60mg 4x daily.  It helps so much, I don't want to think about what my life would be like without it!  My only regret is that I didn't take the Mestinon when the doctor first suggested it.  As I've come to learn, there is no sure thing with MG ALL your tests can be negative and you can STILL have MG.  I am so blessed that I didn't have to wait years for a diagnosis.  My neurologist has treated many sero-negative patients in his career.  Thank you God for sending an angel my way!

June is Myasthenia Gravis Awareness Month
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  1. Hi Rachel,

    You have a good neurologist there that was willing to diagnose you on clinical evidence and not lab tests.

    You know my struggle and my MG symptoms are coming back with a bang. Having a shower gives me ptosis. Anything other than sitting down or lying in bed and I have ptosis. Which is always resolved with mestinon. *sigh*

    Rach xx

  2. For me, the hardest part about test is waiting for the results. Once i know what it is, I can deal with it...I have something to work with. So grateful your Doctor is smart!

  3. {sigh} I'm so sorry you have MG. It just stinks. But I'm NOT sorry you are my friend. : ) MG sisters we are!
    Love you.

  4. Yes the results are hard to wait for. There is relief when you hear a name but glad you were Ok....Keep believing also


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