View Full Version : Is this lupus or not??????

01-19-2011, 02:44 PM
Hi, like a lot of you I do not have a definite diagnosis. My illness or whatever we want to call it started a year ago with fatigue and weight loss. The hand,wrist, ankle and foot stiffness started shortly after. The weight loss in 1 year has been 30 lbs. and that is without even trying. I eat very healthy and used to exercise, but have had to stop because that accelerates the weight loss. I have had every test and scan imaginable. First they thought it was cancer. I had CT and Pet scans and even had a lymph node biopsy becasue my lymph nodes are enlarged. Then they did a colonoscopy and endoscopy. Still everything was negative. All bloodwork has been normal except for 1 time my ANA was mildly positive. I have seen a rheumatologist, and he is pretty sure it is autoimmune but won't give it a name. I have been on plaquenil for 2-3 months and it has taken some of the stiffness away. I go thru good peroids and then will have a flare with exhaustion and the joint pain. I have had on occasion where my wrist or ankle hurt so bad to flex them that you would have thought I had sprained them. Then I can wake up the next day and they are gone. I do not have depression or an eating disorder. I weighed the same for over 20 years- I am 5'8" and weighed 152-158 lbs. Now 1 year later, I weigh 128 lbs. Does this sound familiar to anyone? Thanks. Kaye

01-20-2011, 09:23 AM
Hi Kaye,

I'm new to the forum as well. I think that I might have lupus too-but have yet to be diagnosed. Like you, I have had periods of illness (fatigue, achy joints, night sweats, headaches, chills, hot flushes, hives.... but no darn weight loss,) followed by periods of feeling well. I'm in the process of getting a referral to a rheumatologist, after having seen an allergist who can't help me. I can't tell you whether or not you have lupus, but I can reassure you that you are not alone. In your thread you say "I do not have depression or an eating disorder. " All too familiar-I said the same thing to a doctor about not being depressed because I could tell that she wasn't taking me seriously. People on the site have recommended keeping a diary of symptoms/when they happen...I think that this is a good idea. In a relatively short time I've learned that I'm going to really have to advocate for myself if I'm going to get any answers.

I hope this helps, and I hope you get some answers very soon.


01-20-2011, 09:45 AM
HI Kaye. Welcome to WHL! The "Is this Lupus" question is hard to answer because the autoimmune diseases seem to have so many of the same symptoms. Although our name is about Lupus we welcome people that have have, wonder if they have, or know people that have any autoimmune disease. Many people that are eventually diagnosed with Lupus will end up diagnosed with multiple autoimmune diseases.

I know it is frustrating playing the waiting game but sadly that is how it goes with most AI diseases. You will find so many here in the exact same place! the good news is that, if you want us, we will be here for you throughout the rest of your journey! Welcome to the WHL family

01-20-2011, 10:35 AM
Hello Kaye,
Welcome to the WHL and i hope the threads help with info on symptoms your suffering.

Refering weight loss you have someone here the same i'm the same height as yourself and i'm 9st and i go below at times, i'm terrible for chocololate and can eat anything and it's always loss of weight and refering how you eat you mays well put whatever you fancy down your throat as it won't make any difference.

All your symptoms show the signs and the bloods fluctuate with lupus constantley which does'nt help any of we to get confirmed tests half the time but if it keeps saying nothing is showing in your bloods, you could have immune disorders which throw off simular symptoms and some can be identical.

I really hope they can find out one way or another for you to put your mind at rest, as mines been a very bad waiting game.

Hugs Terri xxx

01-25-2011, 09:09 AM

I went through the same thing in 2005. was seeing an gi dr. he went up down changed my diet everything i still kept loseing weight. i couldn't keep a glass of water in for a while. he sent blood to a lab in california for auto immune disease. i have lupus they said. its a mild case or something else the rheumy says since my blood work changes from + to - ana. all in all i have lupus fibro. and some type of arthritis. i take tramadol for the pain. walk on treadmill for exercise. after a year a put back all the weight i lost. i didn't want to but i did. i still have stiffness and swelling depending on temp. outside. if i over do things flare is worse. bad case of brain fog most of the time. there are people on this site worse than me. so it makes me feel better in the since i could be alot worse. i have a saying i woke up today and thats good.

this is a great site, the people here are awesome. i have met some good friends here. dr's are afraid to lable things so they don't. they also like to keep testing us for crap for the money i have found out. so just hang in there and don't let depression come, thats makes the flare worse. eat good get lots of rest and avoid any stressfull situations and the flares seem to be not as strong if you do so.