View Full Version : Hoping for some help.

09-27-2004, 10:55 PM
Hello, my name is Karen and I am new to this site so bear with me please. First I want to thank everyone for this great site it has already been very helpful. A few years ago I was diagnosed with Fibromyalgia and Irritable Bowel so I have had pain and fatigue for many years. Recently a lot more things have come up and it has me worried. My father and aunt (his sister) both have Lupus different kinds though and have both agreed that my recent symptoms are all right in line with theirs. My hair is falling out at record pace. I have many ulcers in my mouth. I am very sensitive to the sun and have a sun rash as well. I have terrible headaches, intestinal pain, low grade fevers and to top it all off I recently noticed my cheeks and nose are very red. When I went to my doctor he ordered an Ana test that came back negative and naturally I am very frustrated. Has anyone else been through this as well and if so what is your opinion on what is happening. I have appointments with several specialists coming up and just want some relief from all this pain. Any help anyone can give me would be greatly appreciated! Thank you in advance for any you can give.

Many prayers....Karen

09-28-2004, 12:58 PM
Hi, Karen. Some of your symptoms definitely sound "lupus-like"

I will be thinking of you and our upcoming appointments. It's so much better when you know what's going on, huh?


09-28-2004, 11:50 PM
Hello Karen,

I like you stared out with a ton of varied symptoms and have a huge family history of auto immune diseases. Many have lupus even more have RA and I even have a cousin with sclaraderma. I had something like 7+ of the 11 lupus symptoms. Still I went through a hand full of doctors who said I had this that our the other thing but never anything they would commit to. I was DX'ed with fibromylgia and put on anti depressants and told to do some exersizes, ect. ect....Mainly that all my symptoms were simply all coinceident. I saw a rheumy who agreed that I had FM my ANA was also neg, I had high sed rate and crp, I had a high RH but everything else was "normal". Still he took a bunch more labs but then never heard back from them. After wating around for a few weeks I changed hospitals and found a team of doctors who started treating me right away. It was such a relief to have doctors who believed me and treated me with respect. I went from getting 30 T3 a month to suffer throught the pain to 120 vicodin and higher dose of prednisone. The new rheumy took all the same labs over since my old hospital kept giving him the run around. He found I did indeed have a very active auto immune illness taking over my body. Within a week I was being treated for what he labeled as Mixed connective tissue disease. Sort of a all around name since he wasn't sure what disease it was yet. Not long into all this I began to have heart problems, then CNS problems ie seizures memory loss and head aches. For quite sometime things went from bad to worse but I was with a great team of doctors who got me through all of it. To day I have heart, kidney, lung and brain involvement. Most times I am able to keep this disease under control with the right meds and rest I can lead a fairly normal happy life. I hope I have helped you even just a little bit. Being on forums like this has helped me through some of the hardest times of my life. If you need anything post it here. There are many wonderful people who can understand and help you through almost anything. Best of luck and big HUGGIES to you ~Lucy :B-fly: