Illness, Death and Pain.. the Lord Beside Me All the Way

Recovery-- A Continuing Theme in My Life

Miller Fisher Syndrome 

Dana Koogler 

     I recall a story told the family by my great grandfather Charlie Updike Bradley aka Poppy.   He told of a man being taken down the Valley Pike bound hand and foot on the bed of a wagon. They were heading from Steeles Tavern along the pike in the direction of Staunton.  They were taking him to the notorious Western State Lunatic Asylum.  

Some onlookers asked the man where he was going? His reply "To Hell I reckon!".

That phrase... pretty much sums up my life from sometime the first of November right on until after Christmas this year.  Been to Hell and Back.

     

     Beginning of November it became clear to Kenny and I that our son Jared was no longer maintaining his sobriety from drugs but was in relapse.  Another ugly phrase came to mind from an old demotivator.  "Last time I saw you, you had hit rock bottom. I see you have begun to dig.".  The first time I walked in and took a look around the place he was living I knew that was true.   Hell! Trash piled up waist deep on the back deck.

Dark. Dogs.  Cold. Mud. Rain.  Smoke.  Dank.  Get me out of here.  We had a family

pow wow and told Jared he could come home. He needed to come home. We wanted him to come home. We wanted him to get well. We loved him.  Start over. Let's pull together.

The bright note of it all was that we all still loved each other. No bitterness or recriminations. By the day we walked in and found this scene.. he had already been going to a suboxone clinic and trying to get started on getting sober. He was on black tar heroin.  He set about figuring out how to time 

his return home and transferring to the Knoxville clinic. 

         A few weeks later the news that our handsome, funny, smart, sweet -spirited nephew Matt was diagnosed with bone cancer.  Age 16 and facing this.  His father is my husbands baby brother.  Hell!  Pain. Shock. Anguish. Grief.  Tears. Prayer. Lots of prayer and phone calls.  

         A few more weeks and the death of Kenny's step-dad.  Bucky age 90.

Not totally unexpected, but incredibly sad.  Kenny lost his own biological father at age eight due to a tractor accident. Bucky helped finish raising these boys and fathered them and into their midst brought laughter and a little sister with wavy, Cinderella blonde hair and lots of attitude.  Denise was funny and hung in there with those boys.

Pain. Sadness. More tears.  More Hell.

         Christmas approached with me not really caring about it.

So much to cope with in a relatively short span of time.   Jared made it home for Christmas.  Kenny had gone over and gotten his big furniture items.  Jared and I planned to attend Recovery at Maryville Meeting Christmas Night. I'd been going for awhile by myself to try to deal with codependency problems and anxiety and pain.

He showed me his arm on the way there and he had a massive abscess on there.

After the meeting I took him to be admitted at the hospital where he spent the next three days.   He made it home Saturday evening. Kenny picked him up and brought him home.

Pain. more Hell.

         Friday Dec. 27 @ 1300 I was driving to the hospital to visit Jared.

I walked out of the house and said "I don't feel right. Somethings wrong in here" and pointed to my head.  I got a mile from the house and my vision went double like a thunder clap.   I pulled over. I closed one eye and drove home.  I rested. I ate lunch. I was no better so Kenny took me to the doctor.  He sent me to the E.R. where I had a neurological exam., a cardiac workup, and an MRI of my head.  I did a lot of praying.

I had some time to think while I lay there waiting to go in that scanner. The MRI revealed that I had a real bad sinus infection and blockage but no tumors and no stroke.

I went home.  Then Jared was discharged Saturday.

   Sunday morning I woke up with nausea and vomiting. I was dehydrated. I could keep nothing down.  I was growing more miserable by the second.  I asked to go back to the hospital and to be admitted.   I had quit making anymore than a few drops of urine I was so dry.    They kept me and started me on antibiotics, IV fluids, prednisone. They treated me for the symptoms of vertigo and the raging sinus infection. I was having trouble maintaining my body temperature. My respiratory drive became shallow and my cough reflex was faint.  I could swallow. The nausea was improved thanks to a variety of medicines.  I had a scopolamine patch behind my ear to help with the vertigo and nausea.

I could walk but I was like a reeling drunk.  I had some trouble with my speech and my vision was like looking straight into a nightmare.  It was like a crazy kaleidoscope.

     I spent three days in the hospital.  They discharged me and on the way home took me to see an opthalmologist who had no idea what was giving me double vision and vertigo.

He reassured me that "it always goes away".  I was glad to hear that but it did little to

make me feel better physically. The car ride was more Hell. He referred me to a pediatric opthalmologist in Knoxville and urged them to see me quickly.  I was seen later that week.

Jared took me and they were all so kind to me. The car trip there was more and bigger Hell.  I got out of the jeep and burst into tears I was so ill. Just walking was so hard.  He determined that the problem was not with my eyes, but with my brain.  He wanted me seen immediately by Knoxville Neurology Specialists. They are the best neurologists. It can take months to get an appointment and he knew I did not have that long.

He urged me to go to the E.R. at Ft. Sanders and have them keep me and perform an MRI with and without contrast in addition to a bunch of labs and tests.  

     I did not want to go, but I understood this was going to be what fast tracked me to see

these doctors and get me the needed help.  Jared got me settled there.  I told him to go on home as I knew I'd be there all day and possibly be admitted.  I spent the entire day there.

The entire staff at Ft. Sanders was awesome to me.  They knew I was miserable and so sick and scared.  I prayed and I knew God had me. I thought of my nephew bravely enduring all the horrible, difficulties of chemotherapy and the scare he was facing.

I prayed for him and I thought I can do this with God's help.  I just kept my eyes closed and prayed.  I felt the presence of God's Holy Spirit upon me caring for me. Taking away the pain and nausea. Taking away the fear and filling me with peace. I was warm. I was safe.  I was no longer afraid.  I was totally at peace.   God even provided something humorous to laugh at in the form of a patient nearby who was unruly and cursing and fighting.  I could tell it was in the room next door.  Jerry Spring style.... cussin'/wrasslin match.  I could hear those metal mayo stands flipping over and I just lost it. I was glad

I was NOT having to deal with that.

   The second MRI came back normal.

I was grateful for no tumors or lesions and no stroke!  My sinus infection was resolved. 

My labs all looked good.  Kenny came to the hospital that evening and was there when Dr. Wheatly visited me.  He was thinking the diagnosis was myasthenia gravis or ocular myasthenia. He started me on Mestinon which is a medicine to try to help strengthen my eye muscles and clear up the double vision.  The ride home was not bad and I even felt like eating dinner.  He recommended I come in to see his partner in a week or so.

He wanted to see if the medicine helped.   

     My first visit with Dr. Thomas a week later.  I still had double vision.

I still had serious balance problems.  I felt very weird all over.  I learned that day

that all my tendon reflexes were gone.  He had me stop the mestinon since my response to it had not been real impressive. I could not pass a field sobriety test that day. I staggered

wildly trying to walk and could not do it.  I had to be taken to the bathroom by a nurse.

It was dreadful. More Hell. He laid out  four possible diagnoses for me: Ocular myasthenia, a clot in one of my sinus arteries, a stroke, and something called Miller Fisher syndrome.  I had labs run that day for the antibody to Miller Fisher syndrome.  

He planned to have me come back in two weeks.  I was to have an EMG,a lumbar puncture, an MRv and MRa. I was dreading the lumbar puncture. I was thrilled to go off the mestinon since it was griping my belly.

            I read up on Miller Fisher syndrome and learned that it is a rare form of Gullain-Barre syndrome. It is an autoimmune response to an infection.  I'd gotten a flu shot in early September. That was one possible culprit.  I had been treated for mycoplasma in November just before Thanksgiving.  It is another possible culprit as to how I got it.   Mycoplasma is tiny and lives within the white blood cells.. the macrophages.

It is a parasite.  The body produces macrophages to respond to the initial infection and as it delivers helper cells to clear the infection it also delivers more enemies to the body.

I had been treated with antibiotics which killed it, but the damage was done. My own body was killing a certain type of brain cells which affected my balance, my vision, my reflexes and more. 

       I went back a few weeks later to have the EMG done.  The car ride there was not horrible. I no longer had to wear a scopolamine patch. The vertigo was gone. I still had some balance problems, but it was better. I still had double vision,but by wearing one eye patched I was able to function some.  My limbs were tingling and rather numb. Tendon reflexes still gone. I had been noticing a twitch in the neck muscles near my right collar bone.  The EMG showed up "normal". You have to have two abnormalities to consider it an abnormal study.  The one thing that was abnormal generated that same twitch in the right neck/collar bone area.    I prayed to get through that EMG test. It was being electrocuted and poked with needles.  It was concentration camp type stuff. Ugh.
But now I had the diagnosis Miller Fisher syndrome instead of one of the worse problems. It is self limiting. I would make a full recovery in time!  I was pleased and I appreciated the doctor and his staff for their help.

            I was anointed for healing at church prayer meeting.  My family, my pastor Tom Waring and my Rocky Branch Missionary Baptist Church family were wonderful.  God is truly good every day.   The whole ordeal was a journey of growing my faith and trust. The Lord used a child who had been on the wrong track in his life to help care for me. He gave me my son back.  He is healing Jared. He is healing me.  I have come under great conviction that this year I will work on maintaining that sense of deep gratitude toward God for his blessings.  I have put that old anxiety down at the foot of the cross and I will leave it there.  I will work daily on never allowing that old anxiety to ensnare me again.

     My tendon reflexes at returning.  My balance is improving. I no longer have any pain or nausea.  No more vertigo.  My vision is greatly improved.  I only wore the eye patch for an hour yesterday and about an hour today.  It still needs to get better to be 100%, but it is on the way.  I am driving a little now.  I am in the process of trying to figure out  how I can return to work in some capacity.

     Thank each family member, friend, church family, pastor, nurse, doctor, all hospital staff, online friends from Backpacker.com, Facebook, ....... for your love, care, prayers, help.  Thank you Father God for your love, mercy, healing power. For sending the Holy Spirit to wrap me up and carry me and hold me and fill me with peace as I have traveled this path.    I had  planned many things, but this was not among them. I look forward to whatever the Lord has in store for me next.

*edited to add: Other great things that have come out of this is to learn that my nephew Matt is saved! He accepted Christ as his personal savior a few years ago. No matter what happens in this life... his eternal soul is saved. It is my prayer that all my family be saved.
If you have not accepted Christ.. the only prayer he will hear from  you is that sinner's prayer... ask Him to come into your heart?