# Does anyone out there have lupus?



## carolf (Jul 15, 2001)

I have a lot of questions about lupus and was wondering if anyone on this board could help?Does anyone have a link of a support group bulletin board for lupus? Thanks


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## M&M (Jan 20, 2002)

Here is a link to a great support group: http://www.fibrohugs.com./ And it has a lupus forum. Unfortunately, I know virtually nothing about lupus, but I'm sure you'll find some great help over there! Let us know!


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## Guest (Mar 31, 2003)

Hi carolf,About a year ago I was diagnosed with a parasympathetic nervous system disorder that is a precursor to both Lupus and Multiple Sclerosis. Since then, my health has deteriorated somewhat. I think maybe I've been afraid to go back and be reevaluated.If you don't mind my asking, could you share with me what your symptoms are?Evie


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## carolf (Jul 15, 2001)

Evie, As of yet I have not been diagnosed with lupus. I have had the blood tests many times but they have came back neg. I have FM and the symptoms are much the same as those of lupus. The major difference is that there is usually organ involvement with lupus. My symptoms include: major pain on the right side of my body (down my arm, rib cage, and under the rib cage), bladder and pelvic pain, shoulder and neck pain, IBS Bloating and gas almost all the time), some headaches, dry irritable eyes, chest pain,fatigue (very extreme lately), fibro fog The reason I am suspecting lupus and planning to see a specialist is that their has been some kidney involvement lately.( I now have a dilated kidney--although they haven't connected it to anything yet. Hope this helps.


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## Guest (Mar 31, 2003)

Thanx for the explanation, Carol. In reading your symptoms, I am getting even more frightened that it may be where I am headed as well. I have FMS, CFS, IBS and other things wrong as well. The bladder discomfort, bloating (D & C are far better, however), deep joint pains and fatigue are the hallmarks of my distress. I also live with bladder spasms and esophageal spasms and now some respiratory distress a well. I sure hope that neither of us ends up with Lupus. My sister has Multiple Sclerosis and in the last year it has begun to attack her organs.Appreciate your response,







Evie


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## Susan Purry (Nov 6, 2001)

About diagnosis, including use of blood tests: http://www.azlupus.org/Diagnosis.htm http://www.lupuscanada.org/ Bulletin boards: http://www.wehavelupus.com/message-board-forum/ http://www.healthboards.com/cgi/forumdispl...Lupus&number=77 http://neuro-mancer.mgh.harvard.edu/cgi-bi...er=50&SUBMIT=Go


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## Guest (Apr 1, 2003)

Thanx, Susan. I will look into this further if and when I can muster up the courage.... it's almost as if I don't want to know what might be wrong with me... I just want to keep living as best that I can until I can't do it anymore.Evie


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## ThisBearBites (Aug 28, 2002)

Count me into this small club. Docs have suspected Lupus and MS for years. Tested negative for Lupus 15 years ago, but haven't allowed new tests since. I refused to let them do a test for MS. I have a history of "nerve problems" including Reflux Sympathethetic Dystrophy. Denial is just not a river in Egypt. I'm just sick of being sick. Is it wrong if we just fake "healthy" for awhile?


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## Guest (Apr 2, 2003)

Faking good health sounds better than succumbing to bad health, doesn't it? (for as long as we can do it anyway)My aunt died of Lupus and I don't want to follow in her footsteps, but it did show up later in life for her as well....







Ok... so what should we dub this little group club? The "Not Sure If We Have Lupus or M.S. but we're gonna fake it as long as we can Club"? Hey.... that means we may all have a bit of CHUTZPAH !!I don't know what Reflux Sympathetic Dystrophy is so I am going to look it up.Rather than explain what I found, here is a link with a definition: http://www.siumed.edu/surgery/cardiothor/clinical/rsd.html ThisBear.... I seem to be sensitized to life......





















I even get sick from massages.Evie


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## 15206 (Sep 14, 2005)

carolf hi, I have Lupus and I was digionased when I was 19 and I am now 46. Sure I have bad days and good (mostly good). I read all I can fine on it, take good care of myself. (right foods, exercise, get the proper rest and sleep.I have lung involvement with mind and joint pain. I have been using medication for treatment, I can almost tell when I am going to flare up so I know by know (with my Drs. permission) up the amount of meds I take. I lead an active life and injoy my family. Sure there is day wihen you feel like ####, but you go on. It can be a round and round cycle, when you don't feel well you quite exercise and don't keep moving, that just take longer to get it back when you feel well, so I suck it up when I feel like #### and keeping going. The best thing in the world is to have a really good support system and make sure those around you understand what Lupus is. I don't be afraid find out and not knowing is worst then knowing. Red all you can and get a good Dr. Hope this helps you and don't be scared.


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## 16774 (Dec 19, 2005)

hi ....i`m new heremy name is lina and i`m from Egypt....i`ve been suffering from severe pain in my whole body for a year and i made tests for lupus like ANA and anti DNA AND THEY COME BACK -VE but i found white dots in my brain mri and doctors here didn`t confirm anything but fibromyalgia!!!!i`m sooooo afraid that i might have ms or lupus too and cannot pretend beeing normal cause i`m in a terrible state of continues pain that prevents me from doing my daily activities and i don`t know what to do knowing that my symptoms include bladder problems and pelvic pain and painful urination also..... i need help


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## meckle (Mar 5, 2003)

Hi,You guys should check this website out:http://www.butyoudontlooksick.com/2004/11/...poon_theory.php


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