View Full Version : Waiting on a diagnosis

04-13-2006, 05:52 PM
I am new to this site, but I have to say that the support you all show each other is very touching. I have not yet been diagnosed, but it doesn't look good...I am 30 years old, and for as long as I can remember I have been plagued by the strangest and most random illnesses. No one ever made a connection until about 2 months ago. I had a positive ANA test and was referred to a rheumy...when I went to see him, I was feeling great. Most of the test he did came back ok, but he said he wanted to draw blood when I was symptomatic. Does that make a difference? If I do actually have Lupus, isn't is always there? Or does it "hide" from certain tests during a "good day"? I understand how difficult it is to diagnose this disease, but I don't know this doctor, and I'm not sure if he is milking me for money or if he really knows his stuff. I hate to sound like such a pessimist, but I would like someone else's opinion.

04-15-2006, 10:49 AM
Hi TBritt :lol:
Welcome to our family!
One of the symptoms of lupus is the relapse/remission syndrome, it is characterized by periods when the disease activity is minimal or absent (remission) and when it is active (relapse or flare). During a remission, little or no signs and symptoms of lupus are present, making it very difficult to make an accurate diagnosis. Diagnosing the disease when it is active is a very difficult and lengthy process. It is even more so if the disease is not active.
In order to make a diagnosis, your doctor will begin the diagnostic process by asking you many questions and conducting a physical exam. You’ll also have laboratory tests, including ones to see if you have too few red blood cells, white blood cells or platelets (blood cells that help to control bleeding and clotting), and other tests to check your kidney function.
If your doctor thinks you may have lupus, he or she will order a blood test called an ANA, which detects a group of autoantibodies found in the blood of people with lupus. These autoantibodies attack the body’s own cells. However, this test is not diagnostic of lupus. Other laboratory tests to detect specific antibodies such as anti-DNA or anti SM may be helpful in diagnosing lupus or related diseases. Tests to measure the level of complement in your blood may be obtained; levels of complement are often low or reduced in patients with lupus.
Other blood tests may be conducted for diagnosis and as an aid in following disease activity. Blood chemistry tests can help determine whether organs such as the kidneys and liver are functioning normally.
Because kidney problems often occur, you’ll need a urinalysis, which is an examination of your urine. If protein is found you then may be asked to collect all the urine you pass in a 24-hour period for analysis. If your doctor suspects kidney problems, you may also have a biopsy, in which a small piece of tissue from one of your kidneys is removed and examined. This procedure requires an overnight hospital stay.
Your doctor may take a chest X-ray to determine if the disease is affecting your lungs or heart. An electrocardiogram and echocardiogram may also help determine to what extent the disease affects your heart.
The treatment plan for lupus includes taking medications to reduce the inflammation and reduce the activity of the immune system, balancing rest with exercise, and maintaining a proper diet.
Lupus is an unpredictable disease. As I stated earlier, signs of the disease appear and disappear, sometimes for no apparent reason. Because lupus assumes so many different forms and can change, finding the right balance of treatment for you may take time. Your treatment will depend on the symptoms you experience and the organs affected. Once an effective treatment program has been started, continue to follow it. If your symptoms change, let your doctor know so that you can work together to modify your program.
I hope that this has been helpful to you!
Peace and Blessings

04-16-2006, 06:20 PM
Thanks...you seem to know everything about your illness and I feel like I am both blind and deaf when it comes to lupus. I have had some of the tests you mentioned. Positive ANA led to rheumy appt where he did a DS dna test and urinalysis. Both came back ok, so I am still keeping my fingers crossed. The rheumy did say that he was leaning in the direction of lupus because of everything in my medical history...some of these things go back to age 9. Could I have had this for that long - I am now 30. I had chronic bronchitis as a child and also suffered from 2 episodes of pericarditis, pleurisy, unexplained rashes, swelling to the point of not being able to bend my arms/legs, hundreds of kidney/UT infections over the years. I had both the measles and the chickenpox twice. I have had what docotrs were calling non-eruptive shingles, but rheumy thinks may be related to lupus somehow-neuropathy, maybe? I had a series of chest X-rays done about 2 years ago, and there were some questionable looking spots...the final conclusion was that it was calcified lymph nodes in my lung, but now they seem to have moved. I also have lumbar spondiosis and spondiliothesis-Sorry for the spelling-and was just diagnosed with scoliosis in my upper back. I can remember having a family doctor when I was little and he and my mom would sit and talk about my various illnesses and how perplexing they were. Since he retired, my "family doctor" has been whoever is on-call at whatever clinic has the most empty parking spaces. Now I can see that this is probably why all these doctors never put everything together...they didn't have all the pieces. I found a GP that I really liked and trusted. I had been seeing him for about 2 1/2 yrs when he decided to do the ANA test. Now I feel like I am starting all over with this rheumy and I am so scared that he's gonna say-"Quit whining, suck it up and be a big girl. Nothing is wrong with you. It's all in your head." Honestly, it wasn't until lupus was mentioned and I started doing a little research that I didn't wonder if maybe it WAS all in my head. I certainly wouldn't be relieved by a diagnosis of lupus, but maybe validated would be a better word. Does that even make sense. At least I would know that there was really a reason why I just can't get out of bed, why I don't have the energy to blow-dry my hair, why I feel like a little old woman half the time, why pitching softballs with my daughter for a couple of hours leaves me in the bed for 3 days...I'm rambling now, and beginning to feel sorry for myself so I'll close...Thanks again for the info and allowing me a place to rant!!! :wink:

04-16-2006, 07:37 PM
I feel the same way and I too am waiting for a diagnosis. Its difficult. I went from being an average 23 year old to being homebound. I'm very lucky to have a wonderful support system, including a boyfriend who has held my hand through this old. One of the things that lupus has done to me is made me feel like I've aged. Its scary, and along with having good days and bad days physically, I have them mentally. I felt isolated until I found this site. Sometimes someone saying "I understand" and that "Everything will be okay" is all we need. So I understand and everything WILL be okay. Keep us updated and let us know how the diagnosis goes. I've only been a menber of this forum for a few days, but I feel like family. I feel like I have a bunch of sisters who are looking out for me, who understand, and who care. Thank you all.

04-17-2006, 07:50 PM
I agree. I know I should be asking my doctor all the things I have wondered about here, but I can't remember everything I want to say. I also feel guilty about taking up so much of his time with questions that have no definitive answer...this site has allowed me to voice my concerns without that guilt. The moderator of this site really knows her stuff!! I am very impressed with her knowledge and her willingness to share with others. It is so nice to have people to bounce things off of.

04-17-2006, 09:19 PM
It honestly can sometimes take years to get a definitive diagnosis. I was sent to a rheumatologist in 2001 because of a highly positive ANA and Raynauds/joint pain/butterfly rash (I thought EVERYONE's hands/ feet turned white/blue/red with the cold). The first rheumy I went to frankly told me in so many words that he didn't know know why I was sent to him and dismissed all my symptoms.

I then got into to see my current rheumatologist. She was much more concerned and started me on Plaquenil. I was then started on methotrexate a couple yrs ago when my symptoms seemed to progress. Up until 2005 I was diagnosed with UCTD (undifferentiated connective tissue disease). A yr ago, I started having seizures. After many tests, I finally got a diagnosis of lupus of the brain. I had 6 mos of chemo and am now on Cellcept and Plaquenil. I also have quite a few other medical conditions so I take enough pills daily to choke a horse! I'm working with my PCP to get off some of them at this point.

Don't be surprised when you don't get an immediate diagnosis. Like Saysusie said, the symptoms can change and seem to disappear at times.

Hang in there!

04-18-2006, 07:31 AM
I think we all have suffered through the "waiting game" when trying to get a diagnosis. My diagnosis took almost two years before my doctor said, without a doubt, that I had Lupus. By then, I was terribly sick, had lost my hair, my face was swollen from lesions, I couldn't eat because of mouth ulcers (I could go on and on!).
ALso, like you and many others, I think that I suffered from Lupus as early as my pre-teen years, but no one knew what all the different illnesses that I had were about. I was in my 30's when I was finally diagnosed.
When my daughter was very ill, I would go to the internet in search of someplace where I could ask questions, get answers, get comfort for her and just so that she would know that she was not alone. No such place existed at that time. That is why our Beloved Administrator set up this forum for me.
I am happiest when I know that I have given someone a little peace of mind and a lot of information so that they do not feel as if they are wandering in the dark and are all alone!
I wish you the very best and I hope that we can always give you some of what you need, even if that is just to let you know that we understand and you are not alone!
Peace and Blessings

05-02-2006, 07:33 PM
First of all I can't tell you what it meant to me to find this site! I have not been officially diagnosed with lupus by my physicians, but it seems inevitable at this point. As many of you have stated it will be gratifying just be given an answer; to be validated. I've had so many problems and each have been treated symptomatically and I've always felt everything had to be related.
While awaiting diagnosis, however, I am off any and all anti-imflammatories and pain meds which really stinks.

I do have a question... I have much pain around several joints that I truly feel is tendon/ligament in nature. Dr. ordered a bone scan and it showed several areas of "increased uptake" but nothing screaming "arthritis". I have yet to speak to my dr., but what will the next step be? Would an MRI show any tendon/ligament involvement? Has anyone had that experience? I'm so afraid at this point to have to start over...to be told that since my bones aren't effected it has to be "something else". Does anyone else have pain not involving arthritis?

Thanks for any help. And sorry if I seem so naive. I'm just desperate at this point!

05-04-2006, 02:11 AM
Hi Triciaf :)
Pain in and around the joints is not always due to lupus arthritis. It also can be due to other medical disorders that may complicate or co-exist with lupus, including: Fibromyalgia, avascular necrosis of bone, bursitis and tendonitis,
other types of arthritis or infection.
Inflammation of skeletal muscle also may develop in people with SLE. This condition, called myositis, causes progressive weakness, pain and loss of strength of the extremities.
Fibromyalgia is a chronic disorder. Its characteristics include:
- widespread pain in muscles and joints
- fatigue
- generalized weakness
- non-restful sleep.
- headache
- changes in mood
- difficulty in thinking and concentration
- irritable bowel
- urinary urgency
- applying pressure to specific locations on the neck, back, chest, and limbs (tender points) will cause pain and tenderness.

Fibromyalgia is estimated to occur in up to 2 percent of the U.S. population. Fibromyalgia may exist with other conditions, including SLE and rheumatoid arthritis. The cause of fibromyalgia is not known.

Avascular necrosis of the bone-also called aseptic necrosis or osteonecrosis-is characterized by:
- diminished blood flow
- increased pressure within a portion of the bone.
There is weakening of the bone which causes tiny breaks, and eventually the bone surface collapses. The hips, shoulders, and knees are most commonly affected. The initial symptom of AVN is pain in these joints, especially on movement and weight-bearing, such as:
- walking
- running
- lifting objects.
This leads to stiffness, muscle spasm, and limited movement of the affected joint. As the condition becomes more advanced, pain may occur at rest, especially at night.

Tendonitis And Bursitis
A tendon is a strong ropelike structure made of tough fibers that attaches muscle to bone. A bursa is a small sac containing a slippery fluid that is usually found near a joint and allows muscles, bones, and tendons to move easily.
Irritation of a tendon (tendonitis) and a bursa (bursitis) are usually due to physical trauma or overuse of a joint.
Pain, especially when the affected part is moved, is the major symptom of both conditions.
Different areas of the body may be affected, but commonly affected areas include:
- the elbow (tennis elbow)
- the finger (trigger finger)
- the shoulder.

Spontaneous rupture of the tendon in the knee cap (patellar) or ankle (Achilles tendon) is a rare complication of SLE. The person experiences a painful "snap" of the tendon which causes an inability to straighten the leg or to bend the foot.

Lupus Myositis
Muscle pain (myalgia) and muscle tenderness are common, especially during periods of increased disease activity (flare), and occur in 50 percent of those with SLE.
Some people develop inflammation of the skeletal muscles (myositis), which causes weakness and loss of strength.
Lupus myositis commonly involves the muscles of:
- the neck
- pelvic girdle and thighs
- shoulder girdle and upper arms.
The onset of the weakness can be tricky to detect, but difficulty in climbing stairs and getting up from a chair are early symptoms. Later, there may be difficulty in:
- lifting objects onto a shelf
- combing the hair
- getting out of the bath
- raising the head
- turning over in bed.

I hope that I've answered your question :lol:

Peace and Blessings

05-04-2006, 12:57 PM
Well I for one, and I know others have too, HAVE heard it was all in our heads. It took me seven years to finally get a dx and like you even before that I had lots of unexplained illnesses, infections etc. It's a lovely little game this lupus and our drs play with us. Just be very persistent and on top of your own health care, you are your best advocate. If one test comes back neg. tell them they need to look somewhere else to see where it's coming from. In other words, don't let them give you the brush off. The ones where I am are famous for that. It's awful what we have to go through to feel better. The day I got my dx I cried, not from being upset, but from relief to know I wasn't nutso. So hang in there and good luck. I hope you find out soon.

05-04-2006, 07:24 PM
Thank you both for your words of wisdom. Logically I know I have to keep pushing forward to further my cause so to speak. But sometimes I just want to say "forget it" and live with the pain. I've missed the last two days of work because I could barely get out of bed. I have morphine to take if needed and although I hate taking it, I had to today.

Anyway, thanks again, it means a lot.

05-05-2006, 05:32 AM
tricia I am so sorry you are in so much pain right now. I hope this flare of yours abates soon. I know on my really bad days when I have to stay in bed, I also have to get up and just walk around inside the house several times a day cause I will start hurting in spots that touch the bed. It's a bad catch22 I think. Does your dr know you are hurting so much right now? If not you should let them know. They need documentation of when it is this bad and the symptoms and stuff. {{HUG}}

05-05-2006, 09:27 AM
Tracy - you're right about getting up and moving. Although I don't feel like walking around, it helps.
My path to diagnosis probably isn't much different than anyone else's. I had seen a rheumy over a year ago who wrote me off with depression and possible bursitis. My GP recognized my problem was deeper than that and I have been on methotrexate and plaquenil. During this time some symptoms worsened and some were even new. I took it upon myself to find another specialist - so now I'm starting all over at the Lupus Center in Pittsburgh. I've only been to that dr. once and we are just waiting on tests, etc. I haven't called her to tell her about my pain because I'm afraid to. Weird, I know. For so many years I had been told that I'm too sensitive, a baby, a hypochondriac...I guess I started to believe it too although deep down I know it's more than that. Sometimes I think I just need to "suck it up" and quit complaining so much. I see the specialist again in July. By then I'm hoping we have a definitive answer and realistic treatment plan.

Once again, finding this site is a Godsend. I just wish we all could have met under different circumstances!

05-05-2006, 10:25 AM
tricia, new dr or not, I think you should call them at the very least and let them know, you never know they might be able to give you some relief. ;) My MIL called me a hypochondriac one day LOL I can laugh about it now but I was FURIOUS at the time, especially since she takes more meds than I do and they don't know what the problem is with her. :roll: She was one of the first people I gave info to when I got my diagnosis so I could say I told you so.