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Old 08-19-2009, 04:59 PM
sjohnson54 sjohnson54 is offline
Junior Member
 
Join Date: May 2009
Location: Albuquerque, NM
Posts: 16
15 yr Member
sjohnson54 sjohnson54 is offline
Junior Member
 
Join Date: May 2009
Location: Albuquerque, NM
Posts: 16
15 yr Member
Default Limbo yes--steroids no

Quote:
Originally Posted by Riverwild View Post
An LP is normally the next step, but usually follows positive test results from the MRI. What they are looking for in an LP is oligoclonal bands, which indicate myelin breakdown.

You need to know that there are folks here who have similar symptoms to what you are having and still haven't been diagnosed because they don't have enough evidence to be positively diagnosed and doctors hate to label someone with MS until they are sure.

It's commonly called "Limbo" here. I don't have any experience with "Limbo" since I was diagnosed after one incidence of optic neuritis, but there are folks here who can help.

1.5 tesla MRI is not the best, but it is what most of the hospitals have since MRI machines are so expensive. Having an MRI w/o contrast is unusual when they are checking for MS since it's the inflammatory process and lesions that are active that show up with contrast. T-1 weighted, TSE T-2 weighted, etc. are all terms used to describe the images they are taking.

Since you have had incidences of vision problems, I would say wait for the VEP results and go from there.

Even when the tests all come back negative, you know something is going on. It may be that nothing is showing on the tests yet, but it's happening subclinically. Have you done any steroids? A round of steroids may help to relieve the symptoms, even without a diagnosis. Talk to your MD about it.

Let us know what comes of all this! We are here for the duration and we care.
Thank you for your response. Steroids have not been suggested. I admit to being scared of them!
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