Guest guest Posted November 26, 2000 Report Share Posted November 26, 2000 For those interested in the MRS scan mentioned in my previous post, Cheney considers it a powerful piece of disability documentation and is now encouraging patients to get it if they need such documentation. But only at Columbia Presbyterian in NY from Dr. Shungu. He is also strongly recommending all those in the human growth hormone / bovine growth factor study to have the MRS done in NY before and after the study. The readout of this test looks like something taken from the movie " Medicine Man " (with Connery!!): a basically horizontal line across the bottom of the page with periodic spikes of different heights. If I understand this (big if), each spike represents the presence of a particular substance or chemical. The higher the spike, the more of it there is. I think that many abnormalities show up in an MRS of a CFS patient, but what grabbed Dr. Shungu's attention is a particular spike that is almost never seen. According to one member of our support group who saw Cheney recently, that spike is only seen in CFS and " demented children " . Now, our spike is not as high, and I don't know exactly what is meant by " demented children " . And I don't know if this relates to the Mitochondrial myopathy. But it does make you wonder!! If your doctor wants to pursue the MRS, or you can talk your doctor into pursuing the MRS, your doctor's office needs to call medical records at Columbia Presbyterian Medical Center to obtain a medical record number for you (212-305-6151). Then you call MRI scheduling (212-305-0989) and ask for an appointment for an MRS with Dr. Shungu, per the " Shungu / Cheney " protocol: " Attention spectra of CSF in body of lateral ventricle plus the spectroscopic analysis of the hypothalamus " . The test takes about an hour. The cost is $1,230. (I'll let you know what my insurance reimbursement is like. I'm having it done December 11th.) The MRI suite is in the basement of the Milstein Hospital, part of the Columbia Presbyterian Medical Center complex. The address is 177 Fort Washington @ 168th St, New York, NY. It's located near the Washington Bridge on the Upper West Side of Manhattan. The nearest airport is Newark. It typically takes 5 to 6 weeks to get an appointment. Take care. Carol Quote Link to comment Share on other sites More sharing options...
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