tag:blogger.com,1999:blog-3528324373828710021.post4567507406087900022..comments2023-12-12T05:32:26.596-05:00Comments on Lupus, Humor, and Wellness: Prednisone vs. the killer drug reactionCarla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-3528324373828710021.post-79705573139572728632013-02-12T18:35:09.126-05:002013-02-12T18:35:09.126-05:00Thank you so much Carla for your response I'm ...Thank you so much Carla for your response I'm defenatly going to look into these and I do believe in trying all healthy things before resulting in medicating leaving it the last thing I would have to turn to I hate prednisone it's just horrible ... Thank you again ill be checking in I don't go on the Internet to much thank you DestinyDestinynoreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-68126934101453407372013-02-11T13:00:48.726-05:002013-02-11T13:00:48.726-05:00Prednisone is so not my friend. I do know I neede...Prednisone is so not my friend. I do know I needed it a few times with my lupus but it has caused some major changes in my body and weight. I am trying so hard to get back to a place where I can help myself. Just started a blog for my own personal therapy but if you would like to stop by I would love. Thanks for sharing.<br />http://lupustales.blogspot.com/auntpearlhttps://www.blogger.com/profile/18200555684340717816noreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-33514683413879894042013-02-10T21:05:54.177-05:002013-02-10T21:05:54.177-05:00Hi there. I'm glad you wrote.
that wait to se...Hi there. I'm glad you wrote. <br />that wait to see the rheumatologist is so annoying. We have all been through it, suffering, anxious, confused... and waiting. I wish it weren't that way.<br /><br />there are a few forums where a lot of people chat that you might want to participate in. try looking at butyoudontlooksick.com and wehavelupus.com<br /><br />You'll find lots of interesting people and topics there. <br />Sjogren's is another autoimmune disease. It's not uncommon for people to have more than one autoimmune disease. Doctors for some reason these days are more likely to call something "mixed connective tissue disease" than "lupus" and I don't know why.<br /><br />for some very good info on lupus symptoms and diagnosis, look at lupus.org<br /><br />As far as the strange things with your daighter's eyes, it may just be migraines. Right before I get a migraine headache, i see all kinds of auras and zig zag patterns in my eyes and can't read or watch tv or look at the computer- basically can't really use my eyes til it passes. It always passes.<br /><br />As far as the diagnosis, trust your instincts. You know when something just isn't right.<br /><br />You may also be able to find a local lupus support group to attend while you're waiting for that appointment at lupus.org.<br /><br />Also consider there is a whole other line of thinking, beyond medications, for getting your health back once you're develope an autoimmune disease. Please check out this fantastic blog by a doctor who treats with diet and supplements: http://drhyman.com/blog/conditions-category/autoimmune-disorders/<br /><br /><br />My warmest wishes to all of you.<br />CarlaCarla Ulbrich, The Singing Patienthttps://www.blogger.com/profile/15102866927457990437noreply@blogger.comtag:blogger.com,1999:blog-3528324373828710021.post-47253707739505032482013-02-10T02:52:23.096-05:002013-02-10T02:52:23.096-05:00Hi
I never really go on these kind of blogs or si... Hi <br />I never really go on these kind of blogs or sights so I'm not even sure if I'm ok to post so I'm sorry if I'm not doing this right . I just accidentally came across you blog here while trying to find answers for my 15 year old daughter . My husband has diagnosed with lupus about 16 years ago . He was the top subject of the week in a learning hospital where he went through many test and even lymph nodes removal and Bone marrow biopsy then kidney biopsy so on .. We had no idea what it was or what was going on I told my nana ( grandma) about it to find that she as well has lupus so now I know it's coming from both sides of the family . Right now years later my 15 year old daughter has been going through anxiety attacks and depression and horrible fear of loosing her vision so she finally told me when I could tell something was wrong and she said she was seeing burst of white flower shaped lights and when things or people pass slowly by she would see white shadows trailing behind . She dose wear glasses and has a strong prescription . So we took her into an eye doctor and nothing then a CT scan it came out fine but I decited since there was lupus on both sides to check her for it so the first test I guess was a basic ANA test and I was not really expecting it to really come positive but it did so they then tested further wich where as fallowed SCL-70 antibody negative SM/RNP antibody 2.0 positive sjogren's antibody (SS-A) 1.3 positive but then sjogren's antibody (SS-B) negative and centromere B antibody negative .... Now right now I don't really know what all that means these are just test done by a regular family doctor that could not tell me much other than her lupus test showed negative but she was positive for sjogren's and mix connective tissue diseas ? She can not tell me about them and that I need to have her see a pediatric rheumatologist witch I figured . I have to await a month for that appointment so I guess I'm just reaching out for any knowledge of the test results and this sjogren's it just doesn't seem to match up right she dose not have those symptoms :( Destinynoreply@blogger.com