View Full Version : Sick but not diagnosed

01-20-2007, 02:28 PM
I got sick a few years ago and my Rheumatologist was pretty sure it was Lupus (+ANA, joint problems, numbness and tingling, and fatigue) but she didn't want to diagnose me because I didn't have the butterfly rash. Eventually my symptoms went away and I hoped it was just a fluke.

But a few months ago I started to get sick again. My primary care provider is sure its a Lupus flar but I'm waiting to get in to see a different Rheumatologist who can confirm the diagnosis.

I had such a great life and I feel like I've lost it. The fatigue terrible. Some days I'm too tired to stay sitting up in bed. I have arthritis in my knees. My hands turn purple, become numb, and then tingle and ache for hours. None of this is new but there are other symptoms that my doctor tells me she thinks are autoimmune. My hair is falling out. I have heart palpitations and chest pains. I get lightheaded and faint out of nowhere. There have also been a few times where I've gotten really confused and disoriented. One time I couldn't understand anyone who was talking to me and another time I couldn't finish alphabetizing the stack of papers I had been working on. The words just didn't make sense anymore. I also get terrible headaches at the base of my head.

I feel really defeated. All the tests are normal. Even my ANA is negative again. But I'm so sick and even the cardiologist can't find anything. I keep having reactions to the conventional medicines. Prednisone helps but it makes me feel manic and the antiinflamatories are too much for my stomach. I'm doing the best I can with alternative treatments and accupuncture seems to be the only thing that works.

Does any of this sound familiar to anyone? I really don't want to have Lupus, but I do want to know what I'm up against. I've also read about something called CNS Lupus but there doesn't seem to be much information out there about it.

01-21-2007, 09:08 AM
Hi Betty :lol:
I am sad to say that almost everything that you've described sounds familiar. The cold, tingly fingers could be Raynaud's Syndrome (something I also suffer with along with my Lupus). Raynaud's syndrome is a painful condition usually affecting the hands and feet. Some of us developed it after being diagnosed with an autoimmune condition and some of us developed our autoimmune condition after having Raynaud's. Raynaud's syndrome occurs on and off, usually as a response to cold or, as an emotional reaction. The affected areas, usually fingers or toes, turn very white or blue and become numb when cold. On warming, they turn bright red and throb painfully and tingle.
The butterfly rash is only one of several criteria for diagnosing Lupus. Many people with SLE never develop the butterfly rash! There are 11-13 criteria for establishing Lupus. A person with 4 of these conditions can be diagnosed with lupus; 3 symptoms suggest that lupus is probably present, and 2 raise the possibility of lupus. However, the symptoms may be present all at once or develop slowly over a period of time. Here are the criteria:
Butterfly (malar) rash on cheeks
Rash on face, arms, neck, torso (discoid rash)
Skin rashes that result from exposure to sunlight or ultraviolet light (photosensitivity)
Mouth or nasal ulcers, usually painless
Joint swelling, stiffness, pain involving two or more joints (arthritis)
Inflammation of the membranes surrounding the lungs (pleuritis) or heart (pericarditis). This inflammation is called serositis.
Abnormalities in urine, such as increased protein or clumps of red blood cells or kidney cells, called cell casts, in the urine
Nervous system problems, such as seizures or psychosis, without known cause
Problems with the blood, such as reduced numbers of red blood cells (anemia), platelets, or white blood cells
Positive antinuclear antibody (ANA) test
Signs of increased autoimmunity (antibodies against normal tissue), as shown by laboratory tests

Diagnosing Lupus is very difficult and can take months to years for a definative diagnosis. Two reasons account for this difficulty:
There is no single set of symptoms that are uniformly specific to lupus.
There are no laboratory tests yet available that can prove conclusively that a person has or does not have lupus. Also, so many of the symptoms of Lupus can also be attributed to other diseases. In addition, the symptoms are sometimes vague or they may come and go spontaneously. For instance, fever, weight loss, marked fatigue and
weakness which are often experienced by someone with lupus, may also be symptoms of many others disorders, some more threatening, some less so.
Likewise if temporary joint or muscle pain is the initial problem, here again there are so many causes of these symptoms that it may be very difficult to link them to lupus. If pleurisy is a symptom and it spontaneously clears up rather quickly, your doctor may assume that a virus was the cause and not necessarily lupus.
Having lupus does not mean the end of a productive and enjoyable life for you! The outlook for lupus patients is continually improving. Over the past 3 decades, better tools to diagnose and treat lupus have remarkably improved the lives of everyone living with the disease. Here are some suggestions provided by "Lupus: a Patient Care Guide":
Learn as much about lupus as possible.
Understand that you will experience a variety of emotions, particularly when you are first diagnosed and as you adjust to the fact that you have lupus.
Adopt a positive attitude.
Evaluate your personal strengths and resources, such as family, friends, coworkers, and community ties.
Determine what your needs are, then make a plan to address them.
Donít be afraid to set goals for yourself, but be flexible.
Learn how to manage the physical aspects of your disease and the effects they have on other areas of your life.
Learn to deal with stressful situations, because stress and anxiety can make your lupus symptoms worse.
Learn to talk with your health care team, family, friends, and coworkers about lupus and the effect it has on your life.
Donít be afraid to seek help for yourself or your family.
Remember that living well with lupus is possible. It is important that you take control of your illness and not allow it to take control of you. Adopting a positive attitude and striving to be happy can make a big difference in the quality of your life and that of your family and friends.
Remember that you are not alone and that we are here to help you through this and to give you support whenever you need it!!

Peace and Blessings

01-25-2007, 11:46 PM
Thank you. I'm really grateful to finally have a place where I can go for support and people who will listen. And thanks for all the information. I'm seeing a rheumatologist next week and now I have some good questions to ask him.

01-28-2007, 10:12 PM
Please let us know how the visit with the rheumatologist goes!!
We are here for you :lol:

Peace and Blessings