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Ellen: If you have only had PD six years and doing well - no doctor should start requesting tests of that nature and if they do you have every right to say "no thank you, not right now". Only if you feel right that the risk (and there is significant enough risk) warrants more investigation should you do it. Judd has had the same thing happen - automatic scheduling of things he didn't feel was right and no doctor discussed it, they just did it and expected him to go along - we have made it through 18 years and still are pending our first MRI or intrusive tests because we have not felt the symptoms warranted it - what difficulty with symptoms we have had have come from medications- the rest is pure parkinsons, and the mental changes we have been able to manage better since using fewer medications. It is a fact, some doctors are in the business of "tinkering" (unofficial research gathering) without the patient having any disclosure. We have seen it happen with neurologists and MDS especially and have also been involved in legitimate double-blind studies for research purposes. The rule of thumb should be are you maintaining well or improving - any doctors job should be to relieve suffering and help move toward better health and if cannot do that, "guesswork" needs lots of discussion,justification and authorization from you. We feel we have made it this far and will go further because we did not go "hunting" for problems, but dealt with what we had only. When doctors started "guessing" and "tinkering" (with meds) he almost died....it does happen. Arm yourself with the most specific knowledge you can from as many sources as possible about your specific needs - then hold your ground. Just our thoughts and ideas to share.... Marie and Judd ----- Original Message ----- From: "Ellen Luhman" <[log in to unmask]> To: <[log in to unmask]> Sent: Tuesday, December 23, 2003 7:09 AM Subject: tests > Dear Listfriends, > my neuro wants me to have an MRI with gadolinium and a spinal tap. She thinks > I might have an autoimmune disease (lupus or Sjogren's) manifesting itself > neurologically. Has anyone had these tests ? What should I expect ? I am > scared of an allergic reaction to the contrast and of course worried about the > results. I have had Parkinson's for six years and had been doing well . Thanks > for any thoughts or ideas you share. > Ellen > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn