SouthernMan Posted March 25, 2005 Share Posted March 25, 2005 Sorry to hear about your nephew. No, my daughter isn't from Buffalo. I lived there the first 18 years of my life, I doubt there is a connection but you never know. 287192[/snapback] I doubt that there's a Buffalo/environmental connection if she's never lived there. How sure are the attending doctors that it's Lupus? Don't be surprised if they come up with several different diagnosis before they have a chance to poke, observe, and test for several weeks. What were the symptoms that alerted you to a problem? Link to comment Share on other sites More sharing options...
BillsNYC Posted March 25, 2005 Share Posted March 25, 2005 Sure. That would be good. Thank you. 286370[/snapback] I'm still looking for hardcopy stuff to mail to you...but check out our page on Lupus...everything you need to know: http://www.hss.edu/Conditions/Lupus Link to comment Share on other sites More sharing options...
Justice Posted March 25, 2005 Author Share Posted March 25, 2005 I doubt that there's a Buffalo/environmental connection if she's never lived there. How sure are the attending doctors that it's Lupus? Don't be surprised if they come up with several different diagnosis before they have a chance to poke, observe, and test for several weeks. What were the symptoms that alerted you to a problem? 287255[/snapback] My daughter complaines about pain in her bones and around her joints. She also feels pain on the left side of her chest, that's when we took her to the doctor to find out what was wrong. Her first blood test showed a low white blood cell count and she was diagnosed as being anemic. The second test showed her white blood cell count as normal, but she had a iron deficiency. We then had to take her to Children's Hospital in Miami. They took like a pint of blood from her to do more testing. About a month passed and when we went back for the results yesterday that's when they told us that her test came up positive for Lupus. They took more blood from her to do more tests to find out for sure. I'm hoping it's nothing, but my daughter's pain must be coming from something. She doesn't have those pains everyday. Sometimes she goes a couple of weeks without complaining about any discomfort. Link to comment Share on other sites More sharing options...
rockpile Posted March 25, 2005 Share Posted March 25, 2005 I already googled it, but I'd like to hear from someone that's connected to it first hand. I feel like S**T 286074[/snapback] Similar to MS, except MS attacks the nervous system. Your key word is "might"; wait for a diagnosis before you panic, and then don't panic, get educated. If it is lupus, it is probably good they dx'ed it early. They can begin treating it early too. Make sure her doctor is proactive in keeping it in remission. THAT is the key until a cure is found. God Bless! Link to comment Share on other sites More sharing options...
TigerJ Posted March 25, 2005 Share Posted March 25, 2005 I've known several people who have it. It is as you know already, an autoimmune disease, Your body mistakenly directs an immune response against its own tissue. With most autoimmune diseases, they are very site specific. If you have arthritis, it attacks joints. If you have MS, it attacks the protective sheath around nerves, the myelin or Schwan cells. Lupus is different in that it can attack almost anything, from skin (a rash) to joints (like arthritis), to internal organs. I know one person who told me it affected her heart. Another had lesions on the brain from lupus. Unlike MS, I don't think it is so inexorably progressive, and it does vary tremendously in severity. Some people live a very normal life with it, as it seems to merely be a nuisance. In others it can be fatal. While there may be other treatments, prednisone is often used to control attacks. Prednisone is a steroid, with all the attendant risks and side effects steroids can have, specifically bloating and damage to internal organs, particularly the liver. The woman who had the brain lesions is the most severely affected one I know personally. It affected her moods, her memory, and she had episodes where it appeared as if she were unconscious even though she was fully aware of what was happening. She could not move or respond in any way. Scary Let's hope you're little one has a mild case, easily controlled with minimal use of prednisone. Link to comment Share on other sites More sharing options...
Steven in MD Posted March 25, 2005 Share Posted March 25, 2005 My company is working on a therapy for SLE (Lupus). It is found mainly in women. Here is a link to the clinical trial. http://www.hgsi.com/products/LSB.html Link to comment Share on other sites More sharing options...
Steven in MD Posted March 25, 2005 Share Posted March 25, 2005 There has not been a new therapy approved in over 40 yrs....I would look into the American College of Rheumotology (ACR) for the Classification System. It will help you assess severity of the disease. Link to comment Share on other sites More sharing options...
Justice Posted March 25, 2005 Author Share Posted March 25, 2005 Thanx goes to everyone for their kind words and advice. Bills fans truly are the best fans. Link to comment Share on other sites More sharing options...
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