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Old 11-07-2007, 11:25 PM #11
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LizaJane LizaJane is offline
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Join Date: Aug 2006
Location: Brooklyn, NY
Posts: 805
15 yr Member
LizaJane LizaJane is offline
Member
LizaJane's Avatar
 
Join Date: Aug 2006
Location: Brooklyn, NY
Posts: 805
15 yr Member
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I know ovarian cancer is treated with cisplatinum which causes peripheral neuropathy; has anybody told you that that is what you have? neuropathy from the meds?

There are lots of articles on the web, and in medline, about things that help cisplatinum neuropathy, but I think the summary of them is really the list of supplements in the "stickies" at the top of the page.

Perhaps Mayo rejected you because it seemed straight-forward?

Are you getting treatment for your pain? Is that the main concern? Tell us what you understand about the neuropathy and what is bothering you most. Have you read through the posts in the "stickies" section, to get an idea of what people do to improve from this.

If this is cisplatinum neuropathy, it would be a relief for you to know this, I think, because it means you nerves took one big hit, but that hit has stopped.

Also, I agree with your doctors that you can get everything you need here, in NYC. What you might not get is the reassurance you are seeking that everything is being done. I like the HSS group, as a whole, and my pain guy and neuro are there. Dr Latov, who specializes in neuropathy, I think is also there.

Here's a thought: You're a doctor, at the top of your field; you enjoy the stimulation of other smart doctors, but you also enjoy culture: the arts, theater, maybe opera, museums. Maybe you don't like all the arts, but you like having lots to do and lots of stimulation for your family. Would you choose Rochester, Minnesota or New York? Lots and lots of very smart doctors would choose NY over Minnesota. It's just a question of weeding through things, and finding the doctor that's a good fit.

Also, I had a full workup in NY before going to Mayo in 1999. You know what? Mayo did only a few extra things, and all of them unnecessary and unhelpful in making a diagnosis. They sweat-tested me--but I already knew I had autonomic neuropathy because of an abnormal tilt test---they biopsied for amyloid (which it didn't look like I had), and duplicated allt he tests I had in NY (BTW, I had my w/u at Joint Disease, downtown). They turned up nothing different. The only thing it did was serve to reassure me that I was in good hands here in NY.

Glenntaj knows a lot about NY doctors, more than I do; and Melody and her husband have had experience here, too. Maybe you could get advice on treatment at home from them.
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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
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