tag:blogger.com,1999:blog-3749687802138692392.post8597705252120733375..comments2023-05-31T01:45:02.663-07:00Comments on Sick Momma: More About Undiagnosed Diseases ProgramAvivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-3749687802138692392.post-77043135258298638032009-06-18T16:03:40.952-07:002009-06-18T16:03:40.952-07:00SharonMV:
Sorry about the delay in response! I di...SharonMV:<br /><br />Sorry about the delay in response! I did see your comment last week, but it's been a hectic month for me with various procedures and then my parents visiting for a week.<br /><br />I don't think I'd be a good candidate for Still's because although I run low-grade fevers quite often, I have only spiked high fevers once or twice since I got sick. Some of the symptoms for it are definitely stuff I deal with, but I don't have the really high fevers that seem to be the hallmark along with the rash. <br /><br />Thanks for the suggestion though!!!! I greatly appreciate all attempts to help me and my doctors figure out what's wrong with me. And I'm happy to know you're still around; I've missed you. :-)Avivahttps://www.blogger.com/profile/16411667763810131618noreply@blogger.comtag:blogger.com,1999:blog-3749687802138692392.post-49170858712273541912009-06-18T15:50:39.058-07:002009-06-18T15:50:39.058-07:00Shiri: I always try to give credit when it's d...Shiri: I always try to give credit when it's due, and I really appreciated you telling me about the article since it hadn't come up when I'd googled the program! And that's a lovely piece of writing you did, and a Very Cool project you were/are working on!Avivahttps://www.blogger.com/profile/16411667763810131618noreply@blogger.comtag:blogger.com,1999:blog-3749687802138692392.post-72687150894973615662009-06-17T23:49:16.801-07:002009-06-17T23:49:16.801-07:00Dear Aviva,
It's worth a try, if your doctor i...Dear Aviva,<br />It's worth a try, if your doctor is willing to do it. I'm thinking maybe also the length of time you've been ill is a factor. I know of a person through the PID (primary immune deficiency) board I'm part of who actually did get accepted & was evaluated. She apparently has an immune deficiency, but it hasn't ever been completely dxed. I don't think they dxed her, but she wrote that it was a good experience. Don't know much more than that. She is young, but probably has been ill since childhood, not completely disabled as I think she's in college. She is probably on IVIG & other meds which help.<br /><br />By the way, did you read my comment from a week or so back? Just wanted to know if Adult Onset Still's disease may be worth looking into for you. If it is, your rheum probably has already considered it. I don't know all your symptoms, so just mentioned it on the chance it might apply.<br /><br />SharonSharonMVhttps://www.blogger.com/profile/02171770849362460222noreply@blogger.comtag:blogger.com,1999:blog-3749687802138692392.post-7694744576813696452009-06-17T17:20:45.971-07:002009-06-17T17:20:45.971-07:00Woo hoo! And here I came back because I forgot to ...Woo hoo! And here I came back because I forgot to click the "send me follow up comments" spot, but find that even better, you read the article! Oh, and right, called me out :). <br /><br />I know, I totally felt the same hope when I read the article/heard about the program. My god, I really hope this works for you! Can I write a rec to get you in, too?<br /><br />Oh, in case you need some reading to do, I wrote a blog post for my work's staff blog. I think because I've gotten attached to your world, I want to show you something of mine. http://mjhstaff.blogspot.com/2009/06/this-morning-in-oswiecim-cemetery.htmlShirihttps://www.blogger.com/profile/07536774062044836025noreply@blogger.com