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Originally Posted by Moldova  I saw my Neurologist yesterday in NYC. He asked me how was I diagnosed with ON. I told him that they put drops and than looked into my eyes, than took pictures...
He said that this type test brings a lot of falce positive dx.
He wants me to go to Cornell Hospital and have this done in a right way. It means they use the needle IV and than they take pictures and they have a special machine which they use on you while you laying in bed. Test called VERA R/O. |
ON is the ONE symptom that you have, which would not seem to fit with your other dx of Arachnoidities. I don't know anything about this particular test he is suggesting, but I agree that ON should be confirmed at this point. That is why I asked about it in your last thread, because I know that people are sometimes dx with ON and that's not what it is.
I didn't realize there was a test that could be done "after the fact" that might confirm you DID have ON. That's good to know, thanks.
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Originally Posted by Moldova And than another test also related to dx MS: called SSEP (Tibial or Peronial/ medial...) Sorry I couldn't read at the end.. |
Evoked Potentials, in this case "Somatosensory Evoked Response" or "Potential" is a common test for those who do not have lesions, or are otherwise difficult to dx. SSEP is used to double check whether the sensory part of the nerve is working correctly.
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Originally Posted by Moldova He said that if 2 test will be positive than I have to have spinal tab to finally confirm. He said that without those 2 test being positive and than spinal tab without having MS antibodies - MS can't be confirmed if your MRI has no leasions... |
So, even if you get these tests, he can't confirm without the lesions and/or a LP? If you have no brain lesions, and you can't have a LP . . . what's the point in having the other tests?
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Originally Posted by Moldova He also said that even leasions can be sometimes for a different reasons, not MS related so he makes his patients have the above tests to 100% confirm the right dx. He said that a lots of people misdiagnosed in US; he has patients coming to him with MS dx by someone else with dx of ON and when he tests them - people never had ON or MS.. He said that the reason he dx them again because he suspect something else, not MS and he has to confirm the right dx. Meanwhile some of them were taking treatments... I don't like to hear this.
He is PHD in Neurology, goes over the country with lectures, specializes in MS and Neurological disorders - so I believe I am in a good hands. I go to him for 2 years already due to nerve damages after my spinal fusions.
What do you think about it?
Thanks and take care!  |
I agree that a number of people who really don't have CONFIRMED MS, might get the dx prematurely. It may be that they are "Clinically Isolated Syndrome" (CIS), which means they "appear" to have MS, but it can't be confirmed as yet. There is no concensus between specialists about whether these people should wait, or be treated . . . so some do, and some don't.
There is fairly strict criteria for a MS dx . . . but some neuros recognize that there are people who don't quite fit that criteria, yet "probably" have it. Some will dx and treat on that basis, and some won't. MS lesions are known to hide in the brain and spine . . . so they go with their gut.
Remember, it wasn't that many years ago that we didn't have MRI's to rely on. Quite often they'd through us in a tub of warm water and watch us squirm in order to dx. Things have improved, but it's not fool-proof.
Your dx will be difficult, with the other spinal condition you have.
Cherie
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