View Full Version : new and confused!

07-21-2007, 12:06 AM
I'm new and very :mad:

I am not sure if I have lupus and have been tested for everything under the sun. The only thing for sure is that I have some sort of immune disorder. I've been diagnosed with mono several times, but the CBC always comes back negative and chronic EBV has been ruled out, I've been tested serveral times in several different ways for lyme disease and diagnosed with chronic fatigue syndrome. I've had chronic kidney infections that come and go.

Most recently, I've had a low-grade fever for a week and a half. This is going on for so long....and I just can't stand it! :evil:

Right now my symptoms include (and I have flare ups like this a lot, but this has been going on for a week and a half!!! The longest one I guess was about 3 weeks):

-exteme fatigue
-fever (never going over 100 degrees...around 99.5-100 at the most...my base temp is usually around 97.6)
-aching joints/muscles (mostly like muscle knots)
-painful swollen glands
-sour stomach/feeling "full", its hard to describe
-sore throat
-hair loss, but its hard to tell if that was due to the eating disorder or not...

I'm recovering for anorexia nervosa and thus I have my blood taken quite a bit. Leukemia and Lymphoa have been ruled out, as have all of the other syndromes I've mentioned. Any help?

Just so people know, I DO NOT HAVE:
-lyme disease

My grandfather had lupus, but I guess that's nothing to do with anything.

07-23-2007, 07:31 AM
Hi Newyorkgirl;
I can certainly understand your frustration and your anger. Most of us waited for months to a year before we were finally diagnosed with Lupus. In the meantime, we were told that we could possibly have this or that or the other thing (all auto-immune disorders or connective tissue disorders) until we finally got a diagnosis for Lupus.
The diagnostic process is very difficult and lengthy because Lupus can mimic so many other illnesses and it changes (symptoms come and go and they develop slowly over time). There is no one definitive test that says "yes" you have Lupus or "no" you do not have Lupus.
There are certain criteria that you must meet in order for your doctor to finally give you a Lupus diagnosis (see sticky in "Newly Diagnosed" about Lupus Criteria).
From the symptoms that you've described, they all could be attributed to Lupus. However, without the results of lab work and blood tests, they could also be indicative of other auto-immune disorders.
While you are in this diagnostic process, please do not hesitate to come to us with any questions that you may have, to discuss any issues or concerns or to just vent some of your frustrations! We are here to help you in any way that we can. You are not alone!

Peace and Blessings

07-23-2007, 08:32 PM
Hi New York Girl,

Welcome and we all COMPLETELY UNDERSTAND your frustration while going through this diagnosis process. I went through the same thing.
Saysusie gave you some very good information and I would encourage you to keep a journal of your symptoms.

About your grandfather, my rheumatologist says that Lupus is genetic in origin and that your grandfather had it, cannot be dismissed.

We all wish that research would move faster along than it does. It's all about making our society more aware of this disease. It took years before breast cancer became a common topic of discussion, just as diabetes and multiple sclerosis. It's all about everyone becoming involved at any level to educate our society about this extremely complicated disease.

There are no two people who suffer the same, thus making it extremely difficult for doctors to diagnose. You can have lupus and not have a positive blood report, it is such a difficult disease to diagnose. The symptoms that we present with mimic so many other diseases and I am sure it is frustrating for the doctors as well.

Keep coming back, and stay plugged in with positive and supportive people. You will soon find an answer. In the meantime, please take good care of yourself, get plenty of rest and drink drink and drink lots of water.

Much love,

07-24-2007, 05:39 PM
I can give you the name of a really good specialist

07-24-2007, 08:02 PM
I did not show lupus in my bloodwork for at least 2 years. I saw a ton of Drs and no one could figure out anything. I found one DR who put me on steroids and when they helped immediately he said it was some kind of autoimmune reaction. It wasn't until 18 months later that I found a DR that does research on LUPUS and thus specializes in it. He diagnosed me.
Lupus started for me as pain in my wrist that made me think I had carpal tunnel syndrome. Within 2 months I could not stand up from bed - had to crawl to the shower - could not open a door or turn the key in my ignition. I had weird rashes, fever, night terrors (I guess thats what they call them), extreme fatigue - I could not sleep at night though because of the pain. And that was only the start!
I did read something on the internet that says a bone scan can tell if its lupus, arthritus or fibromyalgia. First time I saw such a thing but it says that with lupus the bone scan will "light up" where there is inflammation but since there isn't any with fibro it won't light up.
I don't know if that helps but the only way I was diagnosed was based on physical symptoms and a ever so faint light pink butterfly across my face. So light that I just thought I finally had some color.

07-25-2007, 05:33 PM
thanks everyone! I appreciate all of your input and will be raising better questions to my doctors. I am sure you can appreciate how awful it is being young and feeling fatigued all of the time, amoung other things. :roll:

08-04-2007, 08:39 AM
Hi NewYorkGirl!

Welcome to the Forum! :D I'm SO glad that you found us! :D

Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

I'm SO sorry to hear that you have been going through such a difficult time :cry:, but please know that you are in my prayers...

I'm almost seventeen and am practically in the same situation as you... I have also had E.B.V. ruled out twice and all my doctors know is that I contracted a very strange virus in Austria and that I have some type of auto-immune disease (we know that I definitely have Sjogren's Syndrome). I have been diagnosed with Fibromyalgia as well. I can totally understand your frustration, especially being young myself. There is almost nothing worse than being extremely ill and not knowing what is actually wrong with you! :x So far this year, I have had Bronchitis six times, Whooping Cough (even though I was vaccinated against it), Pneumonia and Pleurisy numerous times! Plus, I have pretty bad Asthma and suffer from chronic Costochondritis. :( Since I became ill last year, I have had Encephalitis twice, kidney and bladder infections about twenty times, G.I.T. infections even more times, Conjunctivitis about forty times (it's chronic at the moment), the list is endless...

Feel better soon and God bless!