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Channelopathy and IC

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  • Channelopathy and IC

    I just want to know if anyone with IC or their family members have been diagnosed with or are suspected of having Hypokalemic Periodic Paralysis, Hyperkalemic Periodic Paralysis, Normokalemic Periodic Paralysis, Andersen Syndrome or in the USA they often call it Andersen-Tawil Syndrome?

    I am suspected of having HypoPP or AS for the last 4yrs or more and have had symptoms for at least 19yrs, though there is some indication there might have been some signs since i was an infant. I am still classified as undiagnosed and none of the over 20 specialists i have seen for this want to conduct the appropriate tests to diagnose. Frankly, these types of disease are poorly understood and probably more rare than IC.

    Anyhow, i wondered if there was a link especially because now some people are having a potassium sensitivity test or something like that to rule in IC. Under the assumption i have AS or HypoPP, the problem would be a genetic mutation causing the channels in cells to not function properly and in my case, letting potassium in but not letting it out well, leaving me with moments of potassium crisis where i get week or when i wasn't listening to my body, get to the point of total paralysis- involved full body and difficulty seeing, moving eye balls, swallowing... If any of you have heard of myasthenia gravis- very similar symptoms except the cause is different.

    The odd part is that some people can go undiagnosed for many decades, especially if the symptoms are "minor". Some people are mislabelled as having chronic fatigue, conversion disorder, myasthenia gravis, psychiatric disorder... and for those who have muscle pain, may be misdiagnosed with fibro or other conditions.

    I find that in terms of menstrual cycle- it flares both my IC and my muscle issues.

    Anyhow, I'm just curious. I ask if any of you have this in your family only because as much as 50% of people can have the genes but not have the symptoms. ie: if i have it, unless there was a genetic mutation in me, my apparently identical twin sister has the genes but so far doesn't have the symptoms, though she could develop them at any point in her life (most likely in teens when i developped it but she's fine so far in her early 30s).

    Thanks for any thoughts