"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
— 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
- 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.)
(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.)
3 comments:
Lori - Just wanted you to know I'm following your story and praying for you. My stepmom contracted ciguatera fish poisoning probably 10 years ago from eating some bad fish while we were on vacation that year. She had very sudden onset symptoms extremely similar to what you're going through (the doctors said it damaged all the nerve endings in her body), and it took them forever to find the correct diagnosis. After finding the right neurologist, she's been treated over the years with medications and home exercises, and she is improving like the doctors never thought she would. There's still hope - don't give up!
Lori,
I am following your blog and keeping you in my thoughts and prayers. I was poisoned by Levaquin back in March (over six months ago) and am still suffering although my symptoms are different than yours. I just signed your on-line petition. Some day soon I will post my full story on the internet and hope to spread the msg and advocate for others as you are doing. Keep up the good work!
Lori,
I am so sorry you are going through this. I, too, was poisoned by Levaquin in March 2006. For over a year I wondered if I would ever feel like myself again. I had an MRI, scans, scopes, etc. At least your neurologist understands what it stems from -- none of my doctors believed it (and still don't). But one day I was myself and then the next day I was a needy, anxious, nauseated, depressed woman who had no appetite and couldn't sleep. The symptoms finally subsided after about 16 months. Then I had two years of feeling pretty good -- about 85-90% back to being myself. Every day I was so thankful to be able to enjoy the simple things in life. About a week ago some of the symptoms returned! How is this possible? Now I have read that there can be "cycling" of this nightmare, and that I just have to wait it out again --- hopefully, not for long this time. I warn everyone I know --- but hardly anyone listens.
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