Merry Christmas and Happy Holidays!

My kids are off for the holidays starting tomorrow, so I have decided I am taking time off from my blog as well.  I will return after the New Year.    Thanks for all of the encouraging emails and messages.  You are all an inspiration to me.  So many of us are going through this battle together.  I hope everyone has a happy holiday and a pain free New Years.

Thanks for reading,

Lori

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.

My Grown-Up Christmas List

Christmas following the aftermath of Levaquin, it definitely makes for a different holiday experience.  Instead of decking all of our halls, we have minimized our decorating.  We probably would have done even less, but the protests of our kids over ruled.  Our extent of decorating depended on their willingness to help.  My son placed the lights on the shrubs and daughter set up the half-lit reindeer.  After almost 15 years of use, I think the reindeer have seen better days.  We have convinced ourselves that from far away they look o.k.  This may be it for our 3 lighted deer.  After this Christmas, I think it is time they meet the big garbage truck in the sky.  Oh well, one less thing to set up next year.  

Our family as a whole is having a hard time getting into the Christmas Spirit this year.  I think my not having energy to do anything, has drained everyone else’s. We are finding we have to modify some of our traditions.  Christmas shopping has been different, but yet fun.  As I sat on the couch with my laptop and my husband across the room with his, we hit the Black Friday sales online.  In just a few hours, from the comfort of our home, all shopping was done in just a few clicks.  Hey, how come we haven’t always done our shopping this way?  It felt good having it all done so quickly and no crowds.  Now all of those brown Amazon packages are starting to arrive.  That was easy!

My family’s Christmas list is pretty typical of past years, but mine has changed quite a bit.  I now am asking for boring “old people” gifts.  An electric throw to help my sore muscles during this cold weather; knives with large handles so that my weaker hands can grasp them; a bleacher seat to endure sitting while watching my son wrestle and my daughter play basketball; warm shoes since my feet feel like they are in snow all of the time; and the perfect pair of socks.  Who would have thought that socks would be so difficult to find.  I feel like I did when I was a small child and complained about the seam at the toes.  The perfect pair of socks has to be soft, yet warm, not tight around the ankles, and have absolutely no seams.  This is a hard thing to find.  My husband says he has given up, and I am on my own for that one.

A few weeks ago, I was sitting in the car as my husband ran into the store for a few quick items.  I caught myself watching people walk across the parking lot, seemingly effortlessly.   I realized I was jealous.  I wish I could move that quickly.  I wish my walking was that smooth.  How I envy the world without pain, being able to do the things you do, not having to care about the pain you are feeling or the pain you will feel afterwards.   With Peripheral Neuropathy, pain follows you everywhere.  It totally encompasses every thought, it invades every conversation.  It goes to the store, to bed, to dinner, to church, everywhere.  That is what I would want most for Christmas, to be pain free.  But while I am at it, I want the same for others in my family that suffers the same way.  My mom suffers from Parkinson’s Disease and Peripheral Neuropathy; Dad has Peripheral Neuropathy, Myasthenia Gravis, heart disease and Diabetes.  My sister recently had bypass surgery and has many other unknown medical complications.  In a nutshell, my family is a mess and I am convinced would be an interesting scientific study.  Why so much rare diseases or adverse reactions in one family?

My mother recently joined Facebook, and I saw this as a post from her as prayer request to one of my cousins.  It brought me to tears. (I have removed names to protect the innocent)

You know, my first thought is for healing, but most times I think we really know that God doesn't mean for us all to be healed. I think I would ask ...that we keep God uppermost in our hearts and that He would grant us the courage and strength to live with the burdens that are ours. For (T), if I could, I would ask relief from the constant and brutal pain he endures...I would ask for at least some periods of ease from the pain. I would also ask for strength in his legs so that he may have the ability to move about in our home with more ease. And I would ask for me, increased strength to get through the day so that I might be a better helper to (T). And when you pray, please include (LB) and (LM)—(LB) is not yet stable from her heart surgery and (LM) doesn't know what her outcome will be. She, too, is in constant pain and suffers incredible weakness. Oh, and please include (A) in your prayers as he prepares to go to Paris Island on Dec. 20, to begin his basic training for the Marines. We pray strength and courage for him as he begins his career in the military. Oh, and I need to be able to go to bed and sleep at night, my body aches from tiredness and yet my mind fights sleep! WOW, I really let you have it didn't I! I asked much--but I know from Him much is given. Love you, M.

Yep, that pretty much sums it up Mom.  That is my grown up Christmas list!