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  • MS or not MS ... how can we know for sure?

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    Old 08-06-2014, 10:22 AM   #1
    yalwayssick
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    MS or not MS ... how can we know for sure?

    How can a patient know if they have MS perhaps intermittent/relapsing without having a Lumbar Puncture done? Is it even possible to rule out MS without doing such testing?

    While its understandable that persons that usually have a combination of health maladies that can cloud the primary diagnoses or condition; I've just about had it with not getting straight forward answers. With so many tests, mri's, xrays, etc; still do not have a definitive answer/response regarding MS.

    With brain lesions, dizziness, vertigo, migraines, inability to walk needing a cane or bed rest, vision problems, cognitive/executive declination, with time periods that are either really good or really not so good.

    At this point, after numerous specialists, appointments and testing; with a clear change in MRI without any changes in the brain lesions, still have not been told what the main condition actually is or could possibly be. Instead the only response was "in people with MS the brain lesions are usually located in a different part of the brain". That statement neither approves or disproves the diagnose or non diagnose of MS or not MS...its an open ended non answer to a very specific condition and question revolving around personal health concerns.

    Has anyone on this board forum received either the MS diagnose and or the Ruling out of such dx without having a lumbar puncture done?????

     
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    Old 08-06-2014, 11:20 AM   #2
    MSJayhawk
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    Re: MS or not MS...how can we know for sure?

    yalwayssick,

    There is no specific tests for MS. All of the testing is done to eliminate MS mimicries. An LP is not necessary for a diagnosis, but it is recommended as a test to eliminate known mimicries. You can still be diagnosed without an LP. Unfortunately, there are doctors who rely on an LP as though it were the Holy Grail- it is not. Of those MSers who have had an LP, 15% show normal or negative results for elevated O-bands. 85% are positive for O-bands. I have had 2 LP's 20 years apart and both have been negative (normal).

    The best thing a person can do is to see an MS Specialist. If the doctor follows the Revised McDonald Criteria, there is no reason not to get an answer.

    While there are "averages", there is no fixed placement for lesions in MSers. There are lesion shapes and sizes which are more consistent with MS, but even an MRI cannot rule MS in or out. There are over 400 MS mimicries. As these are eliminated, an answer can be obtained.

    If all the known mimicries are eliminated AND you meet the standards of the Revised McDonald Criteria, then you can be diagnosed with MS. You mentioned you had been seen by numerous specialists. If MS is a possibility, you should only need to see an MS Specialist. Based upon the MS elimination testing, should a specific test identify a non-MS concern, then the MS Specialist could refer you to a specific doctor.

    There are many MSers who have had a diagnosis without an LP. I had my first LP at a time when the MRI was not used. In fact, I was one of the first MSers to test the MRI for MSers. I just happened to be in the right place at the right time. The LP is a recommended test, but it is not a required test. You can find an MS Specialist who can diagnose you without an LP.
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    Old 08-07-2014, 03:04 AM   #3
    MSNik
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    Re: MS or not MS...how can we know for sure?

    The LP is not a test for MS, but another test which rules out infections, which present pretty much like MS....there is no test for MS.
    The comments you wrote about MS usually is in a different part of the brain, is actually a good reason to believe that it probably ISNT MS. All MS lesions have one thing in common, the size, shape and placement of them....other than that, no two MS cases are alike. They call it a snowflake disease because it is so individual.
    IF you are not getting the answers you want, and you have had all this testing done- please take all your results and films to another MS Specialist to review. A second opinion might be the key to your answers.
    MSNik
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    Old 08-15-2014, 01:37 PM   #4
    yalwayssick
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    Re: MS or not MS...how can we know for sure?

    MSJayHawk, Thank you so much for your valuable response.There's a lot of information and your insight is appreciated

    Quote:
    Originally Posted by MSJayhawk View Post
    yalwayssick,

    There is no specific tests for MS. All of the testing is done to eliminate MS mimicries. An LP is not necessary for a diagnosis, but it is recommended as a test to eliminate known mimicries. You can still be diagnosed without an LP. Unfortunately, there are doctors who rely on an LP as though it were the Holy Grail- it is not. Of those MSers who have had an LP, 15% show normal or negative results for elevated O-bands. 85% are positive for O-bands. I have had 2 LP's 20 years apart and both have been negative (normal).

    The best thing a person can do is to see an MS Specialist. If the doctor follows the Revised McDonald Criteria, there is no reason not to get an answer.

    While there are "averages", there is no fixed placement for lesions in MSers. There are lesion shapes and sizes which are more consistent with MS, but even an MRI cannot rule MS in or out. There are over 400 MS mimicries. As these are eliminated, an answer can be obtained.

    If all the known mimicries are eliminated AND you meet the standards of the Revised McDonald Criteria, then you can be diagnosed with MS. You mentioned you had been seen by numerous specialists. If MS is a possibility, you should only need to see an MS Specialist. Based upon the MS elimination testing, should a specific test identify a non-MS concern, then the MS Specialist could refer you to a specific doctor.

    There are many MSers who have had a diagnosis without an LP. I had my first LP at a time when the MRI was not used. In fact, I was one of the first MSers to test the MRI for MSers. I just happened to be in the right place at the right time. The LP is a recommended test, but it is not a required test. You can find an MS Specialist who can diagnose you without an LP.

     
    Old 08-15-2014, 02:03 PM   #5
    yalwayssick
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    Re: MS or not MS...how can we know for sure?

    MSNik,

    Thank you!

    Quote:
    Originally Posted by MSNik View Post
    The LP is not a test for MS, but another test which rules out infections, which present pretty much like MS....there is no test for MS.
    The comments you wrote about MS usually is in a different part of the brain, is actually a good reason to believe that it probably ISNT MS. All MS lesions have one thing in common, the size, shape and placement of them....other than that, no two MS cases are alike. They call it a snowflake disease because it is so individual.
    IF you are not getting the answers you want, and you have had all this testing done- please take all your results and films to another MS Specialist to review. A second opinion might be the key to your answers.
    MSNik

     
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