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Old 08-21-2014, 05:32 PM #1
simplelife15 simplelife15 is offline
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simplelife15 simplelife15 is offline
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Default And there is this...

Quote:
Originally Posted by Denise9293 View Post
Since December 2013, I have had extreme fatigue and muscle weakness in my limbs. Also experience trouble swallowing and shortness of breath. My neurologist was at a loss but decided to try Mestinon. Symptoms have improved some but I now have twitchy eyes and muscle cramps from the med. I was told that 5% of MG patients test normal. How can I just accept that diagnosis without proof?
When I had consult with my surgeon he mentioned hearing about another newly discovered MG implicated anti-body, but couldn't remember what it was called or if there was a test for it yet. Today I found an article from Nov 2013. Won't let me post a link here for it since I'm fairly new to the board, but here's the title if you want to search for it on*edit*

Research Uncovers New Cause for Muscle-Weakening Disease Myasthenia Gravis

Will be bringing a copy of the full journal article (link to that is in the posted article) into my next appointment with my neurologist to find out what he knows about it. If I have a supportive medical team that's not questioning the diagnosis in spite of being seronegative for AChR and MuSK, is it worth it to do another test just for curiosity sake (assuming a test is/becomes available)?

Last edited by Jomar; 08-21-2014 at 06:49 PM. Reason: per new member linking guidelines
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Old 08-22-2014, 06:53 AM #2
juliejayne juliejayne is offline
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Default

LRP4 antibody tests are not readily available, so far as I am aware.

I guess each of these tests is expensive, so it is no surprise that, with a rare disease if 80% are AChR positive 10% MuSK positive and some smaller percentage maybe LRP4 positive, then the rarer the version you have the more costly the tests will get.

If you have a medical team accepting that you are seronegative MG, the only reason that an extra test would be worthwhile would be if that particular version of MG responded to different treatments.
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