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Good news! My appointment got moved up!

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Old 07-04-2008, 12:15 AM #11
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Default Update -- I'm in limbo
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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Old 07-04-2008, 05:04 PM #12
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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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Old 07-04-2008, 07:33 PM #13
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Quote:
Originally Posted by hjmom View Post
. . . Just curious, did you have o-bands in your LP? . . .

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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Old 07-04-2008, 09:37 PM #14
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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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Old 07-04-2008, 10:22 PM #15
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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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Old 07-04-2008, 10:43 PM #16
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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.
If it's MS, probably Copaxone. If it's CNS Lupus, we didn't talk about that.

~ Faith
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Old 07-04-2008, 11:30 PM #17
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ANA can be elevated in MS also.

jackD

Quote:
1: Neurology. 1995 Feb;45(2):384-5.Links

Comment in:
Neurology. 1995 Dec;45(12):2299-300; author reply 2300-1.
Neurology. 1995 Dec;45(12):2299-300;author reply 2300-1.
Frequency of anti-nuclear antibodies in multiple sclerosis.Barned S, Goodman AD, Mattson DH.
Department of Neurology, University of Rochester Medical Center, NY.

We found anti-nuclear antibodies (ANA) in 26.7% of 150 relapsing-remitting and in 30.4% of 23 chronic progressive definite multiple sclerosis (MS) patients by retrospective chart review.

These patients did not have systemic lupus erythematosus.

Since ANA are not pathogenically relevant in MS, they are false-positive, and likely reflect systemic immune dysregulation in MS.

PMID: 7854544 [PubMed - indexed for MEDLINE]

Quote:
1: Mult Scler. 1999 Apr;5(2):121-5. Links
Autoimmunity in multiple sclerosis: study of a wide spectrum of autoantibodies.Spadaro M, Amendolea MA, Mazzucconi MG, Fantozzi R, Di Lello R, Zangari P, Masala G.
Institute of Nervous and Mental Diseases, University of Rome La Sapienza, Italy.

The aim of this study was to assess the frequency of organ- and nonorgan-specific autoantibodies in MS patients and evaluate whether the presence of autoantibodies is an indicator of disease activity and/or a prognosis factor.

One hundred and five definite MS patients in different stages and with different course and 75 blood donors were tested for the autoantibodies TgA, TMA/TPO-A, PCA, ANA, aCl, SMA, AMA and ANCA.

All patients were screened for the LAC. Autoantibodies to at least one autoantigen were found in 66.6% MS patients and in 13.3% controls (P < 0.001). The frequency of TgA, TMA/TPO-A, ANA, aCl and SMA was statistically higher in patients than in controls. Circulating ANCAs were found in seven MS, a never reported finding.

An early onset of MS (< 20 years) was associated with a lower autoantibody frequency (P < 0.01) Primary and secondary progressive MS had a higher antibody frequency than relapsing-remitting (P < 0.05) or benign (P < 0.001) MS.

Up to 86% of patients were autoantibody-positive during the acute stage, but only 30% of them remained positive during the remission stage (P < 0.001).

A generalised immune dysregulation occurs in MS patients, mostly during the acute stages and in the progressive courses, involving activation of both autoreactive Th1-cells (mainly linked to CNS lesions) and B-cells via Th2 cells.

PMID: 10335521 [PubMed - indexed for MEDLINE]
Last edited by jackD; 07-04-2008 at 11:31 PM. Reason: Irodit cait sppell
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Old 07-24-2008, 07:30 PM #18
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Just got back from Kansas City. Had follow-up appointment with Dr. Lynch today. Initial appt. was July 3. Took films and CD's from 7 MRI's (2002-2008).

She compared past ones to current one. she also compared blood test results from July 3 to 2002 results. Symptoms and 2002 blood test results had led her to suspect CNS Lupus, rather than MS. However, current results looks more like MS to her, so, although CNS Lupus will reain a question mark and possiblty in the back of her mind, she will treat me for MS at this point.

Has decided that the Betaseron has not been effective, so she gave me several other options, including Copaxone, Tysabri, as well as some studies.

We decided to try Copaxone first, and hope for the best. I tend to be what I call "IV-imparied". Hard to find veins, etc.

Will continue to work through my neurologist in Wichita, since he is closer to home, so I will have him set up the Copaxone for me.

~ Faith
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Betaseron 11/2003-08/2008; Copaxone 09/2008-present
Began receiving SSDI 11/2008
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