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07-03-2008, 11:08 AM
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#1 | |||
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In Remembrance
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Quote:
http://www.youtube.com/watch?v=Q978YtUlMBk
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ Last edited by SallyC; 07-03-2008 at 11:42 AM. |
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07-03-2008, 12:40 PM
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Senior Member
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Good luck, Faith. I will be waiting to hear all about it.
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Dx: CNS Demyelinating Disease (2005) Take me back to days full of monkeyshines Bouncin' on a bubble full of trouble in the summer sun Keep your raft from the riverboat Fiction over fact always has my vote And wrinkles only go where the smiles have been... Jimmy Buffett from "Barefoot Children in the Rain" . |
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07-04-2008, 12:15 AM
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Went to Kansas City today for initial appointment with Dr. Lynch. I liked her. She was personable, and seemed thorough. She didn't find out until after 4:00 pm yesterday that my appointment was changed from July 30 until tomorrow, yet she had already read much of 6 1/2 years of my medical records from Wichita Clinic, and Mayo Clinic's records from an almost 2 week-long visit in 2002.
Her first comment was that my medical hx was interesting. Well, I don't really aspire to have doctors find me "interesting". She is not convinced that I have MS. In 2002, Mayo Clinic was unable to give me an official dx. They did not rule out MS, but leaned more towards the dx of CNS (central nervous system) Lupus. She used this term fairly interchangeably with CNS Vasculitis. Dr. Lynch believes that the ANA blood tests that were done at Mayo Clinic make a good case for Lupus. She also believes that my manic symptoms during flares, and my response/dependence on prednisone during flares are more consistent with Lupus than with MS. My neurologist diagnosed me, in 2003, with MS, after my being in limbo for almost 2 years. My LP and MRI results, as well as symptoms, were what he based his dx on. However, the written medical reports that she saw in my records did not convince her that MS was more likely than CNS Lupus. She spent over an hour with DH and I. She did some lab work to check for a bunch of things, including re-checking the ANA blood tests that were done at Mayo Clinic. She also ordered an MRI, which I scheduled to be done locally on Tuesday morning. She plans to change my medication, regardless of whether she decides that MS or Lupus is the correct dx, because she says that my having 1-2 flares per year indicates to her that it is not effective. She has requested that I hand carry a CD of my past and current MRI results to our next appointment, which I will make after I have my MRI. Thanks for listening. ~ Faith
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aka MamaBug Symptoms since 01/2002; Dx with MS: 10/2003; Back in limbo, then re-dx w/ MS: 07/2008 Betaseron 11/2003-08/2008; Copaxone 09/2008-present Began receiving SSDI 11/2008 |
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07-04-2008, 05:04 PM
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Faith,
So glad that this doctor is going back and looking at your whole situation. I hope she comes up with something that can be treated and relieve some of the annual flares you've had to endure. Just curious, did you have o-bands in your LP? Take care and let us know how it goes! Kathy
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Kathy |
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07-04-2008, 07:33 PM
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#5 | |||
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Quote:
I thought so, but she didn't seem to think that my LP results were necessarily indicative of MS, so now I've been wondering, too. ~ Faith
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aka MamaBug Symptoms since 01/2002; Dx with MS: 10/2003; Back in limbo, then re-dx w/ MS: 07/2008 Betaseron 11/2003-08/2008; Copaxone 09/2008-present Began receiving SSDI 11/2008 |
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07-04-2008, 09:37 PM
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#6 | |||
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Grand Magnate
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sounds like a great dr faith.
i hope your f/u appts go well and you can start on an effective plan of care.
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Judy trying to be New Skinny Butt ______________________ You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should. -------------------------------------- "DESIDERATA" by Max Ehrmann |
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| "Thanks for this!" says: | FaithS (07-04-2008) |
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07-04-2008, 10:22 PM
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#7 | |||
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That's awesome Faith!! Did she tell you what she's changing your meds to yet? I really hope she finds some answers for you!
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Kathy |
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07-04-2008, 10:43 PM
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#8 | |||
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Member
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Quote:
~ Faith
__________________
aka MamaBug Symptoms since 01/2002; Dx with MS: 10/2003; Back in limbo, then re-dx w/ MS: 07/2008 Betaseron 11/2003-08/2008; Copaxone 09/2008-present Began receiving SSDI 11/2008 |
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