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Old 01-17-2011, 06:57 PM #1
AnnieB3 AnnieB3 is offline
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Lightbulb New MG Info

I periodically do research on new MG information and these two caught my eye, and brain. This first one basically says that even if you have ocular MG, you more than likely have generalized and they have a blood test to see if you do. Fascinating. Has anyone had this blood test done? I have to give a shout out to the city where some of my ancestors came from: Bergen, Norway. Way to go! Even though it's not "MG specific," it does seem to be one more piece of proof for MG.

http://www.ncbi.nlm.nih.gov/pubmed/21212676

This second one is a video from the Cleveland Clinic. They can figure out if you have MG by imaging your eyes! Wow. If only neurologists would see this as "proof." But then what of those myasthenics who don't have obvious ocular muscle involvement? Or do they? Why don't they do this test on those who have such a hard time with getting diagnosed?!!!

http://www.youtube.com/watch?v=3piHd...eature=related

There are other MG videos on this page, some that are good and some that make me laugh. Neurologists really do take themselves way too seriously.

Annie

A couple of others related to the MMP's

http://www.ncbi.nlm.nih.gov/pubmed/18262287

http://en.wikipedia.org/wiki/Tetracycline_antibiotics

Last edited by AnnieB3; 01-17-2011 at 09:02 PM.
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Old 01-17-2011, 08:33 PM #2
Stellatum Stellatum is offline
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Wow, TWO new tests for MG! Scary and exciting. Scary because I would really hate to test negative again on a whole new test...and throw my hard-won diagnosis into doubt. So I don't think I have the guts to bring these to the attention of my current neurologist.

But how exciting if these tests could be used to diganose other sero-negative, inconclusive-SFEMG patients! What a step forward that would be. I have the impression there are a lot more of us out there than is acknowledged.

One of the observations that got me diagnosed (I am seronegative, have atypical symptoms, and came out borderline on two SFEMGs!) is that a neurologist saw Cogan's lid twitch in my eye. That is surprising because I have only very mild eye symptoms--just a little eye strain here and there (it used to be worse, but I now think that was a side effect of the Mestinon). So maybe this new pupil test would show up even in patients who haven't noticed any eye symptoms.

Abby
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Old 01-17-2011, 10:37 PM #3
Annie59 Annie59 is offline
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[Do you think that myasthenia can look like severe eye strain? Annie59



QUOTE=Stellatum;735875]Wow, TWO new tests for MG! Scary and exciting. Scary because I would really hate to test negative again on a whole new test...and throw my hard-won diagnosis into doubt. So I don't think I have the guts to bring these to the attention of my current neurologist.

But how exciting if these tests could be used to diganose other sero-negative, inconclusive-SFEMG patients! What a step forward that would be. I have the impression there are a lot more of us out there than is acknowledged.

One of the observations that got me diagnosed (I am seronegative, have atypical symptoms, and came out borderline on two SFEMGs!) is that a neurologist saw Cogan's lid twitch in my eye. That is surprising because I have only very mild eye symptoms--just a little eye strain here and there (it used to be worse, but I now think that was a side effect of the Mestinon). So maybe this new pupil test would show up even in patients who haven't noticed any eye symptoms.

Abby[/QUOTE]
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Old 01-17-2011, 11:00 PM #4
AnnieB3 AnnieB3 is offline
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Annie, While that has no relation to what I posted about, I will answer your question anyway. And, please, begin a new thread if you have questions unrelated to the post - out of courtesy.

Eye strain is not the same as MG. MG can cause "eye strain" but there are many causes of eye strain. I am not a doctor and your question is best answered by an ophthalmologist or a neuro-ophthalmologist.

http://www.mayoclinic.com/health/eye...CTION=symptoms

Please, everyone, try to keep comments to this particular thread "on topic." Thank you.

Last edited by AnnieB3; 01-18-2011 at 07:40 PM.
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Old 01-17-2011, 11:13 PM #5
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Abby, I know, "stirring the pot" wouldn't be a good idea in your case! I'm glad you got a diagnosis.

I simply think that the neurology community needs to take ALL testing and clinical signs seriously in the diagnosis of MG. Even photographs. No one test is definitive, even though the antibodies and SFEMG are more "specific."

I'm glad there are people around the world who are still looking at and thinking about what else immune systems might be up to.
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Old 01-19-2011, 05:09 AM #6
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Default Hi Annie,

Thanks for these posts, very interesting particularly as it says in the abstract that you can be seronegative but test positive in the blood test.

Thank you for taking the time to post this.

Rach
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