Mystery Solved?

I have always loved a good mystery. It has been my favorite type of book to read.  The medical field has also fascinated me, and I often think I would like to be Dr. G on Discovery Health.  When my daughter was first diagnosed with Epilepsy, I felt I had become a regular Nancy Drew trying to find out the mysteries of her illness.   I felt that it was my responsibility as a patient, or in her case as a mother, to be well informed of what was happening and to help the doctor with this process.  I could not just sit back and take the word of every doctor without investigating it for myself.  We have to be our own medical advocates.  I am convinced this is one reason my daughter finally improved.  Her doctors were over medicating her, and not one of the child neurologists in that practice would believe me.  I finally concluded if the doctors were not willing to listen to me, then it was time for them to be fired. Yes, I said fired!  I found another doctor 3 hours away, but it was worth the drive.  When the doctor first walked into the room, he just looked at her and proclaimed, “She is toxic!  She has all of the signs.”  This conclusion was backed up by a simple blood test that the others had refused to do.  He literally saved our daughter’s life.  The life she was losing, because doctors refused to listen to a mother’s instinct. 

I think doctors sometimes forget they work for us, not the other way around.  We have hired them for their expertise to help solve the mystery that is occurring inside of us.  I now have spent hours doing detective work on what is happening to me.  I have been appalled by the number of people I have found who have been affected by Levaquin, or other Fluoroquinolones.  I have been very fortunate that I have found not one, but two, neurologists that agreed that I now have a neuromuscular disorder because of Levaquin.  Many people have not been this fortunate, and doctors have turned them away, not believing that an antibiotic could cause such a thing.  However, if the doctors would just take the time to read the Levaquin information sheet, most of these side effects are listed as being possible.   It is even stated that they may become permanent!  My first neurologist did just this.  He immediately reviewed the information sheet and did research online while I was sitting in his office.  I appreciated his open mindedness.  To make sure he wasn’t missing the mark, he referred me to another neurologist.  This one seemed even more convinced of it.  He had served as a military doctor and even stated he saw more lives in the military “messed up” by Levaquin, than any other drug.  He never prescribes this medicine because of the bad effects he has seen from it.  

I have been poked and prodded by 5 different doctors, been given every blood test there is under the sun, MRIs, nerve conduction tests, EMGs, and full body scans.  All of this was done just to conclude I have no other underlying conditions.  All test came back normal except one blood test indicating I had inflammation in my body (duh, kind of new that) and the nerve conduction/EMG test.  My muscles no longer respond normally and the peroneal nerve in my right leg has been damaged.   The final verdict- I have a “drug-induced neuromuscular disorder”.

Three months later, my doctor doesn’t know when, how fast, or even if I will get fully better.  He can only treat my symptoms, since little is known what to do for such a response from a medication.  I am leery of taking more medications, since that is what got me into this mess. He appreciates this, and is very much including me in treatment discussions.  (You can see the list of my treatment choices on the “Symptoms, Medical Findings, and Medications” page.)  He has offered to start me on Nuvigil, a medication used for MS, since some of my symptoms mimic that disease.  However, because of my reluctance to be on unnecessary medication, and the fact insurance will not cover it for my current diagnosis, I am not going to try it.  It would be an experiment anyway, just to see if it worked.  So, for now, my treatment is time.  This seems to be the plight of most of us experiencing this.  We all help each other and share information on what has worked or not worked for us, since the medical community is at a loss of what to do.    That is the reason for this blog.  I feel it is my way of sharing my experience, my knowledge that I gain from trial and error.

In most cases, if a person has neuromuscular problems because of an adverse reaction, the disorder resolves after the medication has been stopped.  It is unknown why Levaquin symptoms persist in some of its victims.   One theory is that Levaquin, and other Fluoroquinolones, never leave the system.  It is always lingering there, causing the problems to persist because Levaquin crosses the blood-brain barrier.  Other theories believe that it affects us at the cellular level, or even our DNA.  I have seen on the Fluoroquinolone Toxicity groups, that some have gotten better in a few months to a year, while others I have spoken to are still suffering 5 years or more later.   Why does this drug group affect some and not others?  Why does some find healing and others don’t?  Perhaps this is another mystery for all of us victims  to help solve together through sharing our stories.

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Valuable lessons  I have learned dealing with chronic illnesses:

1.  Always make a list of questions you have for your doctor.  In such a short amount of time spent with him, you will more than likely forget something.

2.  Take notes, or have someone go with you to take notes.

3.  Keep track of all information

4.  Have doctors share information.  Make sure all tests are forwarded to all your doctors with a summary note.  This has helped stop duplicate testing.  

With my daughter I started a "Care Book".  In a 3 ring binder, I included the following information, and it goes with me to every appointment.

1.  Contact and insurance information.  This includes a list of all of her doctors.

2. Medication chart.  This includes all meds she had been on, why they were stopped, the dates she took them, and if there were any side effects.  You would be surprised what you forget after many years of different medications.

3.  Labs, Test, and Hospital Stays.  I keep all copies of her test and lab results.  I keep record of all hospital stays and what occurred during them.

4.  Appointment Information.  This is where I keep all questions I have for the doctors, and what is discussed during each appointment.

5.  Correspondence.  This includes all letters to and from doctors and insurance companies.

Having all of this in one concise place has helped tremendously in her care.