New Year, New You

'I could tell you my adventures — beginning from this morning,' said Alice a little timidly: 'but it's no use going back to yesterday, because I was a different person then.’

A new year has been proclaimed the start of new beginnings.   I am usually one that always jumps on this bandwagon.  I am a big organizer, I love organization, and every year this is usually a New Year’s resolution for me.  I have to get everything back in order, which somehow lost its tidiness the previous year.   This year, in my mind, it is no different; the storage room, the closets, the kitchen.  Ugh! The kitchen!  This has really lost its orderliness.  Having reduced power in my house because of my Levaquin reaction has really taken its toll on my kitchen.  I am so thankful my husband has stepped up and has helped out in this area; unloading the dishwasher, being the sous chef to my executive chef.  However, my kitchen has taken its toll.  Nothing is where it should be.  It is driving me absolutely crazy!  Believing I can do all of the normal undertakings like every year, I decide the kitchen is the first job to be tackled.  I found out quickly my typical resolution is just not going to happen this year.  Usually a thorough organization of my kitchen will take a day.  This year, our small pantry took a day.  Not because it was so terrible, our pantry is rather small, but because my body will no longer do those type of jobs.   Throwing away out-of-date food, getting my spices in alphabetical order (again), and putting everything back in its proper place completely wiped my arms out.  This was just another reminder that my endurance and strength are now quite pathetic.

This leads me to my other typical pledge for the year, getting in shape.  This has an all new meaning for me this year.  I am (or was) a regular exerciser and have been for the past 10 years.  Strength training has always been my favorite choice, but I would do just about anything to get out of aerobic activities.  As some of my close followers may know, I started having a difficult time with exercise a few months after receiving Levaquin in May, 2009.  From that point on, I was getting weaker in my workouts instead of stronger.  My workouts had gone from 1 hour 4 to 5 times a day to barely making it through a 15 min routine.   I was tired all of the time.  I, of course, never knew what the culprit was.  Even my doctor wanted me to be tested for MS.  It wasn’t until my second reaction to Levaquin in July, 2010, that the pieces were put together. My first “mild” reaction had already started causing havoc on my peripheral nerves.  I know now that was the cause of my symptoms- peripheral neuropathy.   The second “severe” reaction in July absolutely did them in.   So, this year I am starting from rock bottom.  I am determined to get my endurance up.  I have started walking on the treadmill.  I am able to walk a meager .3 miles at a big whopping 1.2 miles per hour.  I used to walk my dogs 4 miles a day in about an hour.  At this rate, it would take me 4 hours to do that now.   My legs will not move any faster.  If I attempt to walk faster, my legs feel as if I am walking through concrete and protest in pain.

I took a break from my blog for the holidays.  I had planned on returning to it much sooner than I did.  However, I have had a bad relapse of symptoms.  Problems that had gotten better or even disappeared are back.  I have read from others that this is typical.  Most report that they have a relapse after about 6 months or so.  I am holding true to that description.  It has been exactly 6 months since Levaquin was poured into my veins from that IV.  Oh, how I wish I could time travel back to that day and stop it.  It is amazing how something that took only a few seconds, has now changed my life.  As I peruse my list of symptoms, only 4 have not returned so far.   The myoclonic jerks, heart racing, decreased balance, and insomnia have improved.  In fact, I have gone from unable to sleep more than 2 hours in 24 hour period, to wanting to do nothing but sleep.  I do still occasionally have insomnia if I am in great pain, but nothing compared to the beginning.   The joint popping had completely disappeared, and now every joint pops, grinds, and groans.  I feel it the most after sleeping.  When I get out of bed, I literally feel every vertebra in my back and neck pop as do my ankles, shoulders, elbows, knees and hips.  My hips grind as if the synovial bursae is just no longer there.  The weight fluctuation has stopped, but unfortunately on the high side.  All of this inactivity has taken a toll on my weight, and I am now the heaviest I have been sans pregnancy.  So, you guessed it, another resolution to try to get this weight off the best I can. This will be difficult since I still can’t move very well.   

I am not sure what has caused the back slide.  Is it just the normal course of Fluoroquinolone toxicity?  Is it all the bad eating habits I adopted during the holidays, or simply the lack of routine?  Is it the natural course of peripheral neuropathy?   I am not sure of the answer, but I am determined to try to stick to my goal of a daily short walk on my treadmill.  I have read that activity will increase blood flow to hopefully encourage repair of the nerves.   I also know the loss of these extra 30 pounds will make it easier on my joints.  I am hoping pledging to the world these things; I will comply with these declarations. After all, as the world has professed, a New Year means a New You.  Yeah, right!

Update:  My lactic acid blood test came back normal.  I am not sure what this means for my next course of action.  I also am not sure if this will totally rule out mitochondrial dysfunction.  I am not scheduled to see my neurologist until the first of March.  I have updated my symptoms list, and also added some new links to the other pages.

Thanks for reading!

A Revisit With the Mad Hatter

Lots of news this week!  I met with the Mad Hatter again, that is my neurologist for those who are just now following.  I am not sure how he would feel if he knew I referred to him in this way.  He got this term of endearment when I met him the first time.  He is the kind of doctor that starts talking in circles; one train of thought leads him to another requiring me, as his patient, to round him back in and to the topic at hand.  It is this kind of thinking though that has me like him.  He is a doctor that loves a good mystery.  What a coincidence, so do I; therefore, it makes us a good pair.  He spent well over an hour with me as if he had nowhere else to go, discussing Levaquin and different theories of what is going on inside of my body.  He likes the fact I am actively researching information and sees this as a positive attribute, not a negative one as many doctors would.

He proceeded to tell me that I did indeed have both large and small fiber neuropathy with sensory, motor, and autonomic involvement.  What does that mean?  My peripheral nervous system is now a mess.  The good news- the large fiber nerves, those with myelin, usually repair themselves.  To what degree is unknown until it happens.  The large fiber nerves control the skeletal muscles.  I already see improvements in my right foot where my large fiber nerve (peroneal nerve) is damaged.  I can move my toes more and also have increased movement in my ankle.  I can heel walk now.  Not that heel walking is a very useful thing.  I don’t exactly go around walking on my heels, but it does show improvement.  My cane has also not been used now for the past few weeks.

The bad news- small fiber neuropathy usually does not improve, and that is what is responsible for all of the burning pain I have in my arms and legs.  I asked him about my other symptoms- numbness in my feet and hands, the constant feeling of a low voltage current running through my body, freezing feeling of hands and feet.  Yep, all related to small nerve neuropathy.  More bad news, small fiber nerves also control cardiac and smooth muscle (autonomic function).  More questions- Is that what is causing everything just feel “slow” in my body?  Is it causing the digestion problems, the no sweating, and the changes in my blood pressure, resting heart rate, and temperature control?  Yes, all small fiber.  Oh that is not good!  But, you know I felt relieved in a way.  It was all validation for what is going on.   

'Would you tell me, please, which way I ought to go from here?'
'That depends a good deal on where you want to get to,' said the Cat.**
'I don't much care where —' said Alice.
'Then it doesn't matter which way you go,' said the Cat

All of this does lead my neurologist to ask more questions.  Why are my muscles as weak as they are and fatigue so easily?  Why was my EMG abnormal?  These are signs of large fiber neuropathy, but that only shows up on the nerve conduction test in my leg.  Small fiber neuropathy, which I have everywhere else, should not cause this much weakness.  One theory of Fluoroquinolone Toxicity is that it causes mitochondrial dysfunction.  I asked him about this and it really peaked his interest.  In a VERY simplified explanation, the mitochondria are the energy source for our cells.  If they are not working correctly our cells have no energy; thereby our bodies have no energy.   They are basically little engines in each cell that are responsible for oxygenation and getting rid of the cellular waste: lactic acid, toxins, etc. When the mitochondria don't work properly, it causes pain due to lactic acid build up and exhaustion since the cell is bogged down with waste.  This could account for the muscle weakness.  He has ordered testing for this, blood work that could show if I have an increase in lactic acid in my body.   There is a lot of research going on right now about mitochondrial dysfunction.  The thinking used to be this only occurred in children, but now scientist are realizing this happens in adults as well and could be the source of many disorders. 

So we ended our hour long meeting with the understanding we will look at the mitochondrial avenue.  Then we will proceed from there.  He has already informed me to count on meeting my deductible with him next year because he has some other things he is interested in looking into if the mito theory does not pan out.  I have been so fortunate to find this doctor.   He may not find the specific changes that Levaquin has done to my body, but he is going to darn well try.  He wants to know- Did Levaquin cause one big explosion in my body and I am left dealing with the aftermath, or did it cause an explosion that has now started a progressive disorder, or one that will not allow improvement?  That is a question only time may tell.

In the news front two large things happened that could affect my family’s life.  There was a break through with stem cell research in Epilepsy and Johnson & Johnson lost their first Levaquin trial!  I have links below to those articles.  I have also posted links for Small Fiber Neuropathy and Mitochondrial Dysfunction.
Thanks for reading!
Johnson & Johnson Loses First Levaquin Trial
Stem Cell Research Holds Promise For Epileptics


Small Fiber Neuropathy--Wikipedia
Small Fiber Neuropathy--Cleveland Clinic


Chronic Fatigue Syndrome and Mitochondrial Failure
Drug Toxicity and Mitochondrial Dysfunction

I will post these links on my Levaquin and Peripheral Neuropathy pages so they can be easily accessed later.

You Have WHAT!?!?

"'Well, I never heard it before,' said the Mock Turtle; 'but it sounds uncommon nonsense.'"
- Lewis Carroll, Alice in Wonderland, Ch. 10

“What do you tell people when they ask, what is wrong with you?” asked my husband, after returning from a lunch with an ex-coworker.  “I was just wondering, because I don’t have a good one-liner to give anybody, a good zinger.  I end up going into this long explanation, and then end up losing them.”  

“Good question,” I told him, “I don’t know either.  People with MS or Fibromyalgia, they have a one-liner to give people, but I don’t have a very recognized diagnosis.  I do the same thing”.

I forget sometimes that not everyone has a medical background, and I start using terms I used as an Occupational Therapist.  People start look at me with this glazed-over look.  They want the zinger.  It is even harder when most of the medical community doesn’t even recognize it as being true, and the fact that it was caused by the very medicine that was supposed to help me.  Who would think that an antibiotic would cause such a thing?  I mean REALLY!

O.K., I am going to start using some of those words now, don’t start wondering off.  Iatrogenic means an illness that is inadvertently induced by a physician or surgeon or by medical treatment.  They are not caused intentionally, but never-the-less they happen.  All of the victims of Fluoroquinolones have an iatrogenic illness.  So, should my one-liner be, “I have an iatrogenic illness”?  Hmm, I think I would definitely lose people there. 

Most of us affected by Fluoroquinolones now have a chronic illness.  A chronic illness is defined as lasting more than 3 months even despite having treatments.  I know what caused it, but no one understands the mechanisms of it.  Why did it happen?  What is really going on in my body?   Do I just simply say, “I have a chronic illness,” and leave it at that?  But you see, to just say that frustrates me.  I just can’t bite my lip and not educate people on being careful with prescription medications.  Here it comes; here is my mini lecture….

Research what you are being prescribed!  Ask the nurse what they are injecting into your IV before they do it.  I wish I had.  I knew I was allergic to Levaquin.  But they just said, “We are giving you an antibiotic just in case”.  I was so out of it from the food poisoning; I could not think to ask what it was.  They knew I was allergic to a medicine which I could not think of the name.  The doctor rattled off a bunch of medication names.  No, that was not it.  The nurse entered and said, “O.K. here is your antibiotic”, and injected it into my IV.  As soon as it entered my body I started having a severe reaction.  I asked after what it was they gave me.  “Levaquin”, he said.  Oh crap!  That was it!  I recognized the name immediately.   I have learned a great lesson from a horrible experience.  Always ask what you are being given, or if you are not in the right state of mind, have someone go with you to ask.  If I had just asked first, I would not be going through this.

I have gotten side tracked; back to the question- what do I tell people?  I could say, “My peripheral nervous system has been damaged.”  But then, that usually leads to the question of why.  Then the comatose stares start because before I know it, I am giving a mini science lesson on how peripheral nerves work, and the dangers of Fluoroquinolones.  That is the neurologic OT in me.  I am interested in this stuff, and kind of get excited about it.  I forget that not everyone is. 

 

The Peripheral Nervous System is the group of nerves that connect the muscles, joints, skin and internal organs to the brain and spinal cord (the Central Nervous System).  They are the electrical wiring of our bodies.  Therefore, my symptoms are vast, since all types of these “electrical wires” seem to be affected in me.  Neuropathy means there is a disease or, in my case, a malfunction of the nerves.  In some of my nerves the outside protective covering, like in an extension cord, has been damaged.  Without this covering (the myelin sheath), the electrical current can’t travel down the wiring (the nerve fibers).  In others, the connection is slow as when an internet connection is slow.  My muscles twitch and contract on their own like when your computer has a miscommunication.  It suddenly goes haywire and travels to a page you did not tell it to go to.   I have joint, muscle pain, muscle weakness as I have mentioned before, but my skin also hurts.  I have digestion problems.  The temperature control in my feet is all out of whack.  It can be 100 degrees outside, but my feet are freezing.  This has my neurologist concerned.  What is going to happen in the winter?  The list could keep going, but I would really get that glazed look from you now; therefore, I will stop. 

You see my dilemma; it is not an easy answer.  It is hard to give a one-liner, a zinger.  Perhaps the easiest is, “I have peripheral neuropathy due to a medication reaction”.  After that, you may want to run for the hills, because the mini science lecture will most likely start.

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I am going weekly!  Beginning November 1st, all posts will be updated on Mondays.  Be sure to periodically check my other pages, since I do update them occasionally. 

Life in the Rabbit Hole

'It was much pleasanter at home,' thought poor Alice, 'when one wasn't always growing larger and smaller, and being ordered about by mice and rabbits. I almost wish I hadn't gone down that rabbit-hole — and yet — and yet — it's rather curious, you know, this sort of life! I do wonder what can have happened to me! When I used to read fairy-tales, I fancied that kind of thing never happened, and now here I am in the middle of one! There ought to be a book written about me, that there ought! And when I grow up, I'll write one.'

When I look back at my life long before entering the Rabbit Hole, I realize I used to have such an active life.  As a therapist, I would have to be at the hospital by 6:45 a.m. to be ready to see my first patient.  I would sometimes run all day, client to client, nonstop with the exception of lunch.  Once my son was born I returned to work part-time, but still my life was hectic with a newborn.  Three years later, the new addition of our daughter added to our crazy filled lives.  I think back to what my days were like then.  I had energy; I kept the house so clean even Bree Van de Kamp would have been green with envy!   I worked part-time, helped raise two kids, attended soccer games, recitals, school parties, exercised, and put dinner on the table.  You get the picture.  I was just like most women with a dual income household and two kids.   I eventually quit my job as an Occupational Therapist, but I could not stay home for long.  I was not a type of person to sit still.   I then worked at our church preschool as an assistant teacher in the pre-K class, and volunteered almost as many hours in the children’s program at our church.   I enjoyed doing things around the house, landscaping our yard, painting the inside of our house.  When my daughter was diagnosed with Epilepsy I even had to include “teacher” as a new job, since she required homeschooling for a year.  Whew!  Just thinking about it makes me tired now. 

Now some days after taking a shower, getting dressed, and blowing my hair dry I am totally fatigued.  I usually throw on whatever is the easiest, a pair of sweats and an old t-shirt.  The house is a mess and beds go unmade.  This is the norm now.  No longer Bree Van de Kamp, now I am more like Oscar in The Odd Couple.   It is embarrassing that a grown woman like me, still with 2 teenage kids at home, appears so lazy and slovenly.  I hate that I don’t have energy to pull myself together.   I no longer have the energy to attend my kids’ activities.  I miss being the one in charge, attending church, even grocery shopping; and I miss EXERCISE!  I love how it made me feel energized after a good workout.  I want to shout to people sometimes,

 

“I am not a lazy person; this is driving me crazy too!  I want to exercise and get stronger, but my body won’t let me!” 

I feel I am still that woman who could not be still, trapped in a body too tired to let her do anything.  I have to find that balance now.   I can do a few things around the house, but not too much.  I am starting to exercise again, but if I push myself too hard, I can’t do anything else.  In this case, pushing is just doing a few simple yoga exercises.  My muscles won’t let me do anything too strenuous.  If I try too many activities, I pay for it the next several days, sometimes unable to get out of bed.   It is very hard to know exactly what that balance is.  Some days I don’t get it right.  

This past Sunday I attended church.  It was good to see people again.  I have been sequestered in my house for 3 months.  However, it is a long distance between our sanctuary and the Sunday School classes.  As I walked that long hallway, my legs became more and more tired.  I felt as if I had run a marathon by the time I got to my destination.  I was trying to also have a conversation at the same time and was getting out of breath.   A far cry from my former self, which I am determined to get back.   I am improving.  I look back to the first few weeks of my reaction, when I was literally writhing in pain on the couch.  I felt I had become permanently fused to those couch cushions.  I had been there so many days.  You know I am kind of getting sick of that couch! Maybe it is time for a new one, hmmm, but I digress.  

 I have done a few shopping trips with my family, I am making dinner now; I am trying to get back into society, and attend my kids’ activities.  But for some reason this week, I am having a relapse of my symptoms.  The all over burning is back, and my arms, which I felt were starting to get some strength, are feeling weaker again.  Yesterday was a day spent in bed because of pain.   I am puzzled why I have made such a decline this week.  Is it too much activity?  Something I ate?  Some Fluoroquinonlone victims report that the symptoms cycle.  They come and go, as if in remission, but then are hit hard with what they thought they had recovered from.   Perhaps that is what is going on. 

I don’t much like this life in the Rabbit Hole; it is a far cry from where I want to be.  I think climbing out of it is going to be much harder than when I fell into it.  Never-the-less it is a climb I will have to endure.  A climb, which unfortunately, is going to require a lot of patience to get to the top of the Rabbit Hole.
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I have added a poll to my blog, please participate.  Thanks!

Through the Looking Glass

“It would be so nice if something made sense for a change”- Alice.

As I was going to bed one night, at 8:30 no less, my daughter came in to tuck ME in.  How odd it is that the role between us has changed so dramatically.  It is like the “Looking Glass”, as if I am inside this reversed universe.    My daughter has Epilepsy, and for about 3 years she had a really rough time.  She is doing much better now, thanks to finally finding the right doctor that would take his time and listen, and many prayers.  During some of this time, especially between the ages of 8 and 9, she needed lots of extra help.  She could no longer attend school; she could barely dress herself, and could no longer do the normal things kids her age did, because of the constant seizures. We were inseparable, because she could not be left unattended for long periods of time.  She became more socially isolated, because she had a fear to leave me.   I was always asking her, “Are you o.k.?”    It seemed that was my continuous question for her.   I had to smile one day when I realized she is now always asking me that very same question.  She is now helping me with all the things I find hard to do. She has been the mother in our relationship since July 17^th.

Our relationship is not the only thing that seems out of place, or odd.  The whole world does.  I feel that the rest of July, August, and now September, has gone on without me.  In my mind, it is still July.  It as if I pressed the fast forward button, and just skipped right over it.    I know I experienced those months….I have all the doctor receipts to prove it!  But, it has been like I have been caught up in a whirlwind of doctor visits and testing. 

 I am starting to have periods of normalcy, where I get a reprieve from the Looking Glass’ alternate world.  Last night I was able to prepare dinner for my family.  My whole body pain is starting to diminish, although the pain in my right leg will not leave because of the damage to the nerve.  It is still there, and will possibly never go away, if the damage is permanent.  I asked the doctor, how he knows if my right leg will get better or not.  His response, “Well, we give it 2 years, and if it is not better by then, it is permanent.”  Hmmm, that is very scientific!  In other words, only time will tell.

The pain is getting better, but the weakness continues to progress, especially in my legs.   I am trying to stretch them daily now because of the increased spasticity in my extensor muscles.  This causes everything in my lower body to be off balance.  In other words, my muscles in the back of my legs are constantly trying to contract, when I need them to lengthen.  People may not see it, but I definitely feel it.  The muscles quiver in protest when I try to force them to go the opposite way of what they want to do themselves.  It is like forcing a stubborn toddler to do something he does not want to do.  My muscles have a mind of their own.

I am ready to leave this odd world.   I want to take control and try to force my body to start turning around and get better.  I have always been the CEO of our family; my husband knows this of course.   It has been an unspoken knowledge that he holds the VP spot!   I have had to temporarily relinquish my title to him, but one day, I will get out of this mixed up world in the “Looking Glass” and reclaim my title!


Thanks for all of the comments left on my blog.  I can't respond to all of them, but I wanted to let you know that I do read them, and appreciate them.

The Mad Hatter

"If I had a world of my own, everything would be nonsense. Nothing would be what it is, because everything would be what it isn't. And contrary wise, what is, it wouldn't be. And what it wouldn't be, it would. You see?”
— the Mad Hatter

I feel like I met with the Mad Hatter the past two days, not because I think he is mad, he actually appears quite intelligent, but he talks in circles. Don’t get me wrong, I really like him.   I met with my new neurologist, and he is the kind of doc which talks out his theories as he works them out in his head. He is more familiar with rare disorders, and has helped others that have had neurological problems from medication reactions.   He goes into long explanations of why he is heading in certain directions with testing, to hopefully diagnose me.  

 "'Speak English!' said the Eaglet. ‘I don't know the meaning of half those long words, and I don't believe you do either!'"
- Lewis Carroll, Alice in Wonderland, Ch. 3

 I think anyone who is trying to pinpoint a diagnosis probably can understand.  I left feeling discouraged and broken.  My reflexes are diminished in both my upper and lower body.  I discovered I have muscle atrophy in my right foot and leg.  I can not move my toes!  How come I never noticed that?!?!  I notice I am not walking the same, but not that!   Even my ankle does not want to move through its full range of motion.  It is discouraging to be constantly pointed out that you are broken.  You no longer function as God intended.  You are not the same!

  

Today he scheduled another nerve conduction and EMG test.  I got the results immediately, which I liked.  The last time I had to wait two weeks.  Today I learned my main nerve in my right leg (peroneal nerve) is damaged from the knee down.  He also discovered that my EMG is abnormal.  It did not appear this way a month ago.  In other words, not only is the nerve not working correctly, but neither are the muscles.  In addition, the muscles in the leg without nerve damage, are not working correctly.  He also ruled out MMN, the most recent diagnosis I had been given.   All of this just leads to more testing.....more blood work, and ANOTHER MRI.

I feel I am just running in circles. We were first told I could possibly have Myasthenia Gravis, then not. Then MMN, then not.  Now Myathenia Gravis is on the table again for a possible diagnosis, or MS.   Who knows!   He also said I may not ever get a “name" for what is going on.   It could be ALL of my symptoms are because of the adverse reaction to Levaquin.  He is trying to make sure there is not something else going on as well.   It is odd to wish for a disorder, but you see, if it is all because of Levaquin, there is no treatment.  A diagnosis may give me treatment options. 

The Mad Hatter enjoys frustrating Alice.  I don’t think my doctor’s intentions are to do that, but I am even more frustrated than before.  I no longer have a diagnosis; I may never get one, and may never be able to get treatments.  All I have to say is- stay away from fluoroquinolones!  Then, possibly, you won’t have to visit the Mad Hatter.


(Please see the link to the right to sign a petition for the FDA to include a "black box" warning that Fluoroquinolone antibiotics can cause Central Nervous System disorders.)

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.