tag:blogger.com,1999:blog-2152211800119076289.post9051421204515722123..comments2023-11-09T02:44:56.895-08:00Comments on Living with Periodic Paralysis: The Blog: My Story: How I Got My Diagnosis Of Periodic ParalysisSusan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-2152211800119076289.post-89540177743377237112018-03-08T18:53:58.719-08:002018-03-08T18:53:58.719-08:00Just read your blog. My husband has been suffering...Just read your blog. My husband has been suffering with these same things. What strikes me the most about your blog is some specific details 1) runs in your family (it runs in his too, for generations!) 2) low potassium after exercise and during paralysis episode (mayo clinic caught a PP episode, did blood draw, said he was clinically low potassium) and 3) oxygen saturation going down during exercise (he has in fact experienced that while in hospital). So now I am wondering if perhaps this is what has been going on. Like you, his doctors are all agreeing that it is all in his head. Social Security has denied him because he doesn't have good enough medical evidence to support his claims (due to doctors saying he's mentally ill). Likewise, his other family members have been treated the same way. One of his cousins pretty much lives in bed, has also been denied disability, and doctors also treat her badly. Very sad state of our medical care in this country!!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2152211800119076289.post-24237638203988611792015-11-20T12:33:30.890-08:002015-11-20T12:33:30.890-08:00Susan, I was the one who asked HOW you got your dx...Susan, I was the one who asked HOW you got your dx. If I was not a CFSME/Fibro SURVIVOR for almost 40 yrs. I wouldn't have believed such a horrible experience. But, I DO believe you as I know what it is like to have experienced such a horrific ordeal for so long. Now, I believe that I may have this-believe as I haven't gotten an actual DX yet. My endo suggested that I MIGHT have this and when I asked him to tell me about the disorder his response was "LOOK IT UP." Probably because he didn't know anything about it or has ever treated a patient with it. so it continues.... Thanks for posting the info. Take care and I hope that you feel better/stronger soon. You are indeed a very courageous and caring person. Diane Lindeman Anonymousnoreply@blogger.com