Brought to You by Levaquin

On July 17, 2010, I entered Alice's rabbit hole~Well, pushed is more like it.  I am still falling down that hole, and don't feel I have hit bottom yet.  I have entered a world I don't recognize.  Even my own body is different.  Nothing is the same, I have to learn about the all new, not necessarily better, me.  My body no longer reacts to things the same way.  I am losing hair, my body has gained, lost, gained, and then lost weight again from the tailspin it is in now.  I sometimes walk as if I am drunk.  My body protests with weakness and pain if I do even the slightest activity.  This is not me!  I used to work out daily, I painted the whole inside of my house by myself.  I used to walk my dogs, work in my garden beds!  What do you mean my body is exhausted just by getting dressed every day?!?  What happened!?! Snap out of it!!   LEVAQUIN happened! Just like when Alice drank from that ever famous bottle that said "drink me", and changed her body and her surroundings, that is how I feel Levaquin has affected me.  I am now trapped in this unfamiliar world, that I now have to make familiar.   

On July 17, 2010, I woke with a case of food poisoning which was relentless.  My husband took me to an immediate care emergency clinic, where I was given 3 bags of IV fluids because I was so dehydrated.  Since my WBC count was extremely high, the physician decided I also needed an IV antibiotic, "out of precaution".  I was given the medication Levaquin through the IV and had an immediate adverse reaction. I began experiencing extreme pain, in my hips, back, and head.  By the time it was over, I was extremely weak, and felt as if I was moving through thick mud or concrete.   I was then given predinosone through the IV to help counteract the reaction from Levaquin, but was made worse.  For eight days, I felt as if acid was coursing through my body.

Over the past two months, my symptoms have increased.  I have been having severe joint pain in every joint, muscle weakness and neuropathic pain in my feet.  After multiple trips to the neurologist, he saw I was getting worse, instead of better.  He referred me to a Rheumatologist to help rule out other disorders.  I have been given a cervical MRI, multiple blood tests, nerve conduction/EMG test, full body scan.  All came back negative, except for one.  The nerve conduction test showed that I am having demyelinization of the peripheral nerves in my body.  I have been diagnosed, temporarily with MMN (multi-focal motor neuropathy), an autoimmune disease that mimics ALS. Temporary, because neurological disorders are hard to diagnose, and my symptoms could change over time, which could change the diagnosis.   It is very rare, and there is little literature on how to treat it.  This past weekend, I was given 3 solu-medrol infusions through outpatient.  It was a chance I knew I was taking.  No one could guarantee it would help, or possibly make things worse.  I was at a cross roads, where a decision I did not want to make, needed to be made.  I took the chance, and unfortunately it did what we did not want to happen.  It made me worse.

My neurologist has now referred me to another neurologist that is more familiar with rare disorders.  I have mixed emotions about this, because in this short time, I have become attached to my current doctor.  I really like him, and he listens.  However, he is also wise enough to know that my condition goes further than what he is equipped to understand.  Another great aspect I like in him.  

One of the biggest questions is did Levaquin start this, or was it just a catalyst to something already there.  Either way, Levaquin IS the reason for my current condition.  My first symptoms actually started in my hands about a year ago, with muscle twitching and weakness.  I thought maybe I was just using the computer too much, so I backed off some from using it.   Then the symptoms spread, and I was feeling muscle twitching throughout my whole body.  I started to notice I was getting weaker with my workouts, instead of stronger, and was able to do less and less. I had just complained to my primary physician, that something was wrong.  I was feeling really tired, getting weaker, and had these annoying muscle twitches everywhere!  She had just referred me to the neurologist when this happened.  Ironically, I was given the Levaquin in between the referral and my first neuro appointment.  

With that said, I have to back up to May, 2009.  I was also given Levaquin then for a skin staph infection.  I had adverse reactions then too, but they seemed really mild compared to now. I complained of extreme fatigue, joint pain, a "fluish" feeling.   That is about the time these general "annoying" symptoms started.  Levaquin is known to cause Central and Peripheral Nervous System disorders in less than 1% of the people who take it.  So we are back to the question......Did my first reaction to Levaquin slowly start something "cooking" in my nervous system, causing the first symptoms, and the second reaction was a catalyst?  Or was something there already, and the Levaquin just made it worse.  My current neuro suspects everything is related to the Levaquin.  

Either way, I am where I am regardless.  I am still falling down that rabbit hole, hoping to hit the bottom soon, so that I can find my way back home.