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Originally Posted by EE03
Welcome and thanks for posting this info. My neuro is in the process of ordering the Athena tests and is also looking at testing me for CMT too. At present, I'm still idiopathic but several here have encouraged me to look into these and your post is timely in my case so I can't thank you enough.
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EE03: I was idiopathic for six years before the tests had improved enough to find a genetic mutation indicating CMT. It's definitely worth doing the Athena test every few years as long as you remain idiopathic.
Unfortunately, during the time I was idiopathic, I was unnecessarily treated for CIDP, which was terrible. I did IVIG for six months, which did nothing. Then I did high-dose Prednisone for seven months, which actually made my PN worse. I also put on 30lbs, got heart tremors and sweated profusely. That was four years ago and I still have not lost all of the weight I put on (my face still looks chubby) and I still occasionally have an irregular heart beat. Shortly after all that, I did my third Athena test for CMT and it came back positive. If I had a positive test for CMT a year earlier, I never would have had to go through all that.