To the Lupus sufferers, please tell me what you think.

Hello all,

I have visited this board previously with a few questions, and was told I don't have Lupus.

However I do have Lymes disease, and my doctor had me tested for Lupus. When she got the results, she said it's mild, not really anything, just a mild skin Lupus. I took that with a grin of salt, as she did as well.

Well, as times goes by, I feel  Lupus symptoms are growing. I used to get really bad rashes on my arms in the summer, used to be very sensative to the sun, had major body aches and pains, especially in the areas where I've injured the area, like my ankles and knees. I've had wrist pain, but thought it was because of typing on my Laptop while sitting on the couch, like I'm doing right now. I get massive headaches, will urinate a lot, especially at ight, find it hard to control my  urgency to go, have high blood pressure issues, and severly dry skin, mouth, hair, and...that's it for the dryness. I don't have a Malar rash, I have tons of energy at all times of the day and night, have no body aches and pains for a while, and can excercise with no issues. As of late, I've been suffering from bowel and digestive issues, almost like I have a candida overgrowth. Can  Lupus cause bowel issues? Do any of the suffers find that when you eat high sugar or carby foods you get tired or sleepy? I actually think I hve a host of things going on, but the Lupus scares me the most because my mother, grandmother and uncle died from kidney failure, something I'm trying to stay away from, But Lupus loves to destroy kidneys. Also, I see this weird kind of dark patch of ski  on the top of my forehead that seemed scaly, yet smooth, and I recently I lost hair on one side of the left side of my forehead. It seems to have come out in a day.  I don't know, it's just weird, and scary, ad if you ca offer some insight, that would be wonderful. I see the Dr. in 2 weeks. Thank you.

Hi Jen, I cetainly hope no one here told you that you don't have lupus. No one here is a dr. and are not qualified to give you a diagnosis.
It's not unusal to have your symptoms to progress or even cross over to other auto immune diseases, It's even very possible to go through very long periods of time with no symptoms at all. That's why it's so hard and takes so long to make a diagnosis.
Are you on steroids? that was one thing that could cause bruising. You have asked a lot of very good questions and hopfully others can give you some advice. Also take pics of some of the bruising so you can show them to the dr. write down all you questions so you don't forget anything. The thinning hair can be from Lupus or from steroids.
I look forward to hearing what others say and keep us informed.
hugs
carol

Hey Jenisis! I have bowel problems too. I am not sure if it is caused from meds or lupus. pretty sure its lupus considing all my meds have been changed several times and still have it. not kidding, about 10 minutes after eating, I have a bowel movement! and this is everytime I eat....not just occasionaly. Sometimes even a snack.. Also have jelly like substance in some bowel movements. I too have the urgency to urinate. I don't have the luxery of getting the signal and being able to hold it. When the urge comes, I better go quick. Been told that it is inflamtion that causes both of these problems. The only time I didnt have it was on high doses of pred, but since that is being tapered down, its back. So far, I havent been able to find anything to help with these issues...

about urinating at night...have you had your kidneys checked recently? That was one of my main symptoms I was having before I was diagnosed with Nephritus. I would get up 4-6 times during the night to go, the other sypmtom was/is blood in urine. When I would urinte it would look like tea or sometimes a little lighter than coke. If not, I would def get them check especially with the family history. If it is caught early, it is usually very managable. Do you know if there is protein in your urine? The good thing is researchers have come very far on kidney problems and can be treated more effeciatnly than the past. Cellcept is a drug a lot of doctors are using nowadays rather than the toxic cytoxan! Most people using cellcept have few side effects if any. I was put on cellcept and prednisone and have had great results. I would def tell your doctor about your night issues. There are many causes of nocturia

I am sorry you where told you deffinatly didnt have lupus here. I have found that everyone on here is extremly helpful and encouraging! I hope you get all your questions answered and let us know what you find out when you go to the doc!!! 

Hi Jenisis, Gosh you have a lot symptoms. I know how hard it is to wait for a proper diagnosis, but proper is the key word I believe, in order to receive good treatment. I would document every symptom for weeks and share the symptoms with a doctor I trust. Yes my bladder gets inflamed and I wet myself. My colon gets hit and I have mucus and blood at times. My skin gets rashes that even ooze at times I hope you get the right care. God bless, Tammy.

Hello all,
I'm sorry it's taken so long for me to get back to you. I just haven't been well. Thank you so much for all of your extremely helpful comments. I see we're all diff., and I need to get thoroughy tested to be properly diagnosed. I'm seeing my Dr., and getting a plehora of test on Monday. I actually can't wait to be poked, lol. I'll keep you all abreast on what's going on. Lots of love, and well wishes. Be well.