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Old 03-06-2009, 09:07 PM #14
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DizzyLizzy DizzyLizzy is offline
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DizzyLizzy DizzyLizzy is offline
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Join Date: Dec 2008
Location: Minnesota
Posts: 222
15 yr Member
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Quote:
Originally Posted by lady_express_44 View Post
Yeah, it happens . . . and sometimes they are wrong too.

This just doesn't seem to add up to PPMS though, does it?

His "gut feeling" is PPMS . . . based on what criteria? Amy has lots of "enhancing brain lesions", and mentioned nothing about spinal lesions. She has not progressed significantly in 3 yrs . . . and he wants to start her on Copaxone.

Did he do a LP, and how many O-bands were there?

Have you had relapses and remissions (worse, then better periods)? Are you accumulating obvious disability between progression?

Why couldn't this just as easily be "benign" MS . . . at least based on her MS-experience to date?

I just don't see where he is getting his "gut feeling" from . . . but it doesn't sound like he is communicating things to Amy very well either though. That doesn't mean to say that I think he is necessarily wrong . . . I just don't get yet what he is basing his assessment on.

Cherie

Cherie,

I had an LP in January and I am trying to look through my test results regarding the O-bands. I found the following information: Oligoclonal Bands # (abnormal) Present
I have so much "medical lingo" information in my report, is there another term I can look at to find the # of O-bands?

I have not recieved the records from my last set of MRI's yet, so I don't have anything to refer to other than the ones from Dec 08 and July 06. When we were talking with the Dr. about the latest MRI, he said that they also found several lesions in the brain stem and the thoracic and cervical spine. I did not get the feeling that there were a lot.


I am so glad I posted this thread....I am feeling so much better knowing that others feel that the Dr. having such a "hunch" of PPMS so early in my diagnosis may not be the actual case, and that ppms tends not to be diagnosed so quickly. I am feeling much more positive, really. Thank you!
__________________


Amy



DO WHAT makes you happy, Be with WHO makes you smile, Laugh as much as you breathe & LOVE as LONG as you LIVE




.

July 2006- First significant SXs, suspect it started back in mid 1990's
1/21/09 - Positive MS Dx
2/17/09 - 2nd Positive MS Dx
4/2/09 - MS Dx 3rd Neuro - finally found the Dr. who has the characteristics I was looking for
.

10/8/09-optic neuritis flair, Cog Fog, chronic headaches
5/4/09 - 12/15/09 Copaxone
1/15/2010 - First Tysabri Infusion - 3/25/16 - Last Tysabri Infusion
3/3/16 - signed the documents to start the Lemtrada journey
4/25/16. Lemtrada begins.
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