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Some of the following entries chronicle my experiences dealing with a peripheral nerve hyperexcitability disorder and its diagnosis and treatment; others are posted in order to provide information about other invisible illnesses and support for those who must deal with them. Pay no attention to posting dates. Some material was transferred from a private blog, but I continue to make changes to all of it. All comments are moderated.
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Just an FYI if you think your test was in error. My first VGKC test was positive, my doc retested before I start immunotherapy. My second test was negative – so it looks like I’ll have the test run a 3rd time. Aargh. Muscle twitching is very mild in me, but I have a bunch of other symptoms that are totally debilitating at times. Best of luck in your pursuit!
ReplyDeleteKris K
Thanks, Kris! You sound a lot like me - I really couldn't care less about the twitching at this point (it's usually not in my face), except as it might help me get a diagnosis - but the other symptoms are hell. The pain is excruciating, which is impossible to explain when you look fine and others don't know your normal pain threshold. (Mine happens to be extremely high, but who knows that but my husband, parents, and siblings? If I say something is excruciating, good golly, it is! But getting doctors to believe that is another matter.)
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