Lupus or Not?

Ercooley · Posted: Fri Jun 20, 2008 7:32 am Post subject: Lupus or Not?

I've been having a hard time every since I got pregnant with my daughter 4 yrs ago! I had some symptoms before my daughter, but thats when things spun out of control! I had a very hard pregnancy, naseau vomiting, high blood pressure, tacicardia, anemic, and a horrible cough that caused contractions to start at 5 mths! Luckily they were able to stop them.

After my daughters birth, everything was supposed to go back to normal, but it didn't. It just kept getting worse. All my symptoms continued, and I kept getting new ones. 4 yrs later, I have periphal nerve damage, autonumic nerve damage, migraines, hypermobility, seizures, joint pain, rash after the sun, facial lesions lasting up to 5mths the longest, leaving scaring behind, always sick, sinus, earaches. I also have blackouts, and I guess what they call brain fog. I was told 6 mths ago I had Lyme disease, and after 4 mths of antbiotics, that just made me worse. The doctors have changed direction again.

I'm so frustrated with this mystery!! They looked at MS, ALS, Genic conditions, Lyme, Now with the sun reaction and facial lesions, there looking at Lupus or Propheria. I just want to know what it is!! I haven't had much success finding a rheumy that will listen.

Batch007 · Posted: Fri Jun 20, 2008 7:37 am Post subject:

Welcome Ercooley

I am also new here and awaiting final dx. I wish you luck in finding a RH/Dr that will listen and help you. You will get lots of good information from this site and even if it isn't lupus, you will find much support here. I know that I have.

Take care, Batch007
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Life is a highway, remember, you choose your direction.

KathyW1958 · Grizzly Bear Joined: 12 Jun 2008 Posts: 714

Hi and welcome to the forum. There are a lot of good people that come in here. I hope that you can find a good doctor that can figure out what is happening with you. Sometimes Lupus takes a lot of years to diagnose, because it can mask itself as many different illnesses and a lot of doctors don't know that much about the illness. It is a serious illness with no cure. I hope that you do not have it. I have had SLE Lupus for most of my life. I do hope that they find out what the problem is.

Kathy
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Lupus for many years. Like most of my life. Sjogrens that started at 35 and Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

Medications:
Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

Saysusie · Posted: Fri Jun 20, 2008 9:31 am Post subject:

Hi Ercooley Laughing

It is true, Lupus is a very difficult disease to diagnose. Symptoms of lupus can appear and disappear many times during a persons lifetime and diagnosis is difficult as the symptoms presented can be similar to many other conditions. No single lab test can tell if you have lupus. Many lupus symptoms imitate symptoms of other diseases. Making a diagnosis of lupus has always been difficult. It can take months or even years for doctors to piece together the symptoms to diagnose this complex disease accurately. Making a correct diagnosis of lupus requires knowledge and awareness on the part of your doctor and good communication between you and your doctor.
The most useful tests used to help diagnose lupus identify certain autoantibodies often present in the blood of people with lupus. For example, the antinuclear antibody (ANA) test is commonly used to look for autoantibodies that react against components of the nucleus, or "command center," of the body's cells. Most people with lupus test positive for ANA; however, there are a number of other causes of a positive ANA besides lupus, including infections, other autoimmune diseases, and occasionally as a finding in healthy people. The ANA test simply provides another clue for the doctor to consider in making a diagnosis.
Some tests are used less frequently but may be helpful if the cause of a person's symptoms remains unclear. The doctor may order a biopsy of the skin or kidneys if those body systems are affected. Some doctors may order a test for anticardiolipin (or antiphospholipid) antibody. The presence of this antibody may indicate increased risk for blood clotting and increased risk for miscarriage in pregnant women with lupus. Again, all these tests merely serve as tools to give the doctor clues and information in making a diagnosis.
Other laboratory tests are used to monitor the progress of the disease once it has been diagnosed. A complete blood count, urinalysis, blood chemistries, and the erythrocyte sedimentation rate (ESR) test can provide valuable information. Another common test measures the blood level of a group of substances called complement. People with lupus often have increased ESRs and low complement levels, especially during flares of the disease. X rays and other imaging tests can help doctors see the organs affected by SLE.
As you see, the tests that help to identify Lupus often depends upon the progression of the disease itself. Many of us have had to deal with the diagnostic limbo, wanting to know exactly what is wrong and what can be done about it. Due to this, many doctors will begin treatment of symptoms before a definitive diagnosis has been made.

I hope that this has been helpful to you.
Peace and Blessings
Saysusie
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Look For The Good and Praise It!

Oluwa · Posted: Mon Jun 30, 2008 11:51 pm Post subject:

Hi Ercooley..

Welcome..just justing in on you seeing how your diagnose is coming?

As Saysusie says for many a long process, then there are some, just like that, diagnose..but I suspect they had symptoms and just related it then to something else like I did, or wrote it off.

I had everything but IT, Lupus..for years. Treated, felt well, got sick, treated...well again. Then one day my face rash stayed, was never an allergic reaction. I was flaring without DKNY Be Delicous perfume, who knew all those other times it wasn't allergic to my makeup, to lotion...

Keep a journal.
Symptoms, start dates, end dates..if there is one.
Progression of symptoms.

You don't have to have a disease to treat the symptoms....

Welcome again with a warm hug..
Keep looking for your wellness,
Oluwa
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