Written by: Rachel Brummert, Executive Director
Sitting in the neurologist’s office, I was obsessing over a
crooked painting on the wall. I got up to straighten it and when I turned
around, he was staring at me.
“Ms. Brummert, there are things we can do to try to slow the
progression but…”
I realized I didn’t hear a single thing he had been saying,
and after repeating what he’d just told me about my test results, I started to
lose focus again, and I couldn’t wrap my head around any of it.
The lack of focus was in part what brought me to see him in
the first place. At 40 years old, I found myself not being able to concentrate,
not being able to find the words I wanted to say, and had a strange sense of
verbal dyslexia as I had called it; I would switch words mid-sentence. I
noticed a rapid decline in my memory as well. It started out as short term
memory loss, not being able to remember what I had said 5 minutes ago and
having to repeat it, and as time progressed, I started losing my long term
memory as well. My family would tell a story from when I was growing up and I
would have no memory of it. They would show me pictures and it was like I was
looking at someone else. Those symptoms, coupled with seizures, facial
numbness, and twitching prompted me to talk to my doctor about it.
Two MRIs, a CT scan, a lumbar puncture, and a brain biopsy
confirmed the diagnosis of Neurosarcoidosis. It is a progressive systemic
granulomatous disease and it can affect any part of the central nervous system.
It manifests in space occupying lesions in the affected organ. Because I have
the progressive kind, I will continue to decline, and eventually, I will no
longer be able to take care of myself.
What makes this diagnosis all the more scary is that there
is credible documentation dated April 17, 2013 that were obtained through a
Freedom of Information request from the FDA itself which indicate Levaquin- a
drug I took four years prior- and other fluoroquinolone antibiotics can cause
Mitochondrial Toxicity. Mitochondrial Toxicity is implicated in serious,
life-threatening neurodegenerative diseases such Neurosarcoidosis.
Neurosarcoidosis is a neurodegenerative disease.
Would you take Levaquin, Cipro, or Avelox if you knew it
could cause a neurodegenerative disease? I doubt it. The FDA knows about this
and not told patients or doctors.
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