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Member
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Join Date: Aug 2006
Location: Brooklyn, NY
Posts: 805
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Member
Join Date: Aug 2006
Location: Brooklyn, NY
Posts: 805
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Update
I think I've made clear that I have new neuro symptoms over the past month, culminating over the past two days into total skin involvement, but greatly in the the hands and face. Also, for some reason my LDL jumped 100 points.
I finally reached the nurse of the bone guy. She says this is not from Forteo, but I should stop while she talks with the doctor. Nobody's reported it. And, by the way, neither is she. They NEVER report symptoms to the FDA. This is a doctor who sees hundreds of patients on this medication, which most doctors don't have the comfort to use.
Then I saw my neuro. He said I have an acute small fiber neuropathy, unrelated to my long-standing axonal neuropathy. He's seen 4 or 5 cases in the last few weeks,a nd he thinks there's a neurotrophic virus going around. He's hospitalized at least one of them. He said all but one are getting better without IVIG or plasmaphoresis. He suggests hanging tight and hcekcing in next week. And stopping the Forteo.
He gave me lyrica and Klonopin, for interim comfort. Yes, an unrelated event, he says. My nerves are my achilles heels, he says. but it's not the same illness. Termites and cockroaches, his favorite phrase. That and, Let me think about it over the weekend; you relax and I'll do the worrying."
He put in calls to at least 2 other doctors while I was in the office, to ask if they'd ever seen the lipid changes, for instance, or forteo issues. He's a very hale/hearty kind of guy, and with a big booming voice shouts out to his secretary to get so and so on the line for a question; or get so and so to call me. Very old time, paternalistic, and you know, it's reassuring.
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LizaJane
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--- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009
---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst
Last edited by LizaJane; 10-12-2007 at 03:08 PM.
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