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Current Topic: I am not a doctor but I can help u out alot the best i can.

Hey everyone! I understand i do not have Lupus at this point but I'm on here to help you all the best i can. My mother had Lupus systemic which is the worst kind. I have researched Lupus and know alot about it from taking care of her until she passed away. DONT think you are going to die because it was the hospitals fault partly that she passed away. I am new but I am here to help ANY question I will answer. I wish this site was around when my mom had it but if i can help other people than i'm doing my job right then.

Dani~

Dear Dani,

I to am new to all this. I've always been ill since I incountered mononucleosis. I just been pushing through my life trying to be normal. I never heard of Lupus until I went to a dermatologist for sores on my scalp. I was upset when she assumed this. I am a great outdoors girl.
I thought maybe it's ringworm or Lymes disease. I search with another dermatologist after self care for rigworm which included cidar vinegar and a bleach solution.

The sores have came back as well as chest pains. I also had a left side lump and dull pain last year. My gp confirmed my urinalysis and us was negative. I felt releif until I had the chest pains. The sore are back so I'm going to the dermatologist wednesday.

You must be a young angel. I've gone threw things in my life. I'm 47 so I blame alot on the change of life that I learned doesn't happen overnight but years. I'm afraid of being miss diagnosed. However I have educated my self. I have a history of mononucleosis, unknown fever, depression and fatigue.

I just want you to know it feels good to have someone that can listen. I have a husband and son that are to die for.
I feel I can't burden them with my troubles as I am taking care of two sickly elderly parents.

God only gives you as much as you can handle. I'm in denial that I have Lupus. I'm going to ask this dermatologist to do an
ana test on me.

I am so happy you had a good relationship with your mother.
I always wanted that with mine. It never happened she only lets me know if she needs something.

I don't want to bring people down. You are so sweet thanks for letting me e=mail you.

God Bless
Chris

Hi. I notice that there is nothing related to males with lupus on this site. I am a male and I have been living with lupus since 1987. May I participate even though I am not female?

Hi Dani, my name is Debbie. I haven't been diagnosed with lupus but I will see a rhumatoid dr. on Tuesday. It's my first time so I don't know what to expect. I'm scared that the doctor won't find out what is wrong with me. I have symptoms and it was because of a billboard that I found this site. I've been researching this disease for a while now and on Thursday this past week I finally called. Does it take a while to get diagnosed?

Hi Dani, Is the malar rash common in african americans? And I have alot of weird symptoms such as migraines,fevers, uti's, swelling in my knees and elbows, and bad skin rashes. He did a blood test, several of them and they came back ok. Only thing he said is that I have extremely high levels of inflamation. Please, what does that mean? Could I have the disease but it is not yet detected?

OK, here is a question...I was initially diagnosed with SLE in 2003, this spring I had a "falre", during my hospitalization they discovered I have also developed Sjogren 's Disease...I had the typical facial numbness, mimicking of a stroke....now, 6 weeks later I still have some nerve damage in face which makes for a speech problem, going to speech therapy soon....Does this resolve , do you know? Thank you for your time.

Hello Dani, Sorry about losing your mom, but you have to know she is no longer suffering, and is in a much better place. This is my first visit to this website. I have most of the symtoms of lupus and through the information on this site I have self-diagnosed. For two years I have suffered with pain and doctors could not tell me what was wrong. I am caucasion and 42 years old no history of lupus in my family. I will request a test from my rhuemotolgist. I feel relieved that at leat I know my pain is labled. can you give me any advice ? any info to combat this illness? I have a beautiful daughter that I have to live for. I would appreciate anything you could tell me about living with this... Thank you

Chris, just so you know, lupus WILL cause a false-positive mono test. You probably had lupus when you thought you had mono.

Hello Dani, I can relate to you I lost my mom last year to auto immune hepatitis. I too went through alot with her illness the strange thing is I was auto immune most of my life, auto immune hemolytic anemia. The research I have done says that once you have been auto immune you are more likely to get another one. I was recently diagnosed with fibromyalgia and I was told 3 years ago while in the hospital that I had the onset of emphysema from second hand pollutants which I think is now starting to grow enough for symptoms to actually show up. My concern is with my past medical history no other test except RA was done to determine if I had fibroymalgia or something else.
Typically doctors do an RA, Lupus, and Thyroid test to rule out things before determining your symptoms are fibromyalgi which my doctors did not do. Lately, my brain fog has been getting worse and I feel so limited physically even with meds. I would really like to hear from people with Lupus and what their first symptoms were.