View Full Version : help! help!
have been in the hell of no diagnosis since Nov. 2003. Then I had an ANA of 1:640 with high titers, along with all-over pain and extreme fatique; in fact, the connective tissue pain is what prompted my family doc to order the auto-immune blood work stuff. Two following ANA tests were negative, as was the lupus profile. I saw one horrible Rheum who got mad at me when his therapy didn't work--prednisone. Long story short, I got a new Rheum. He says it's fibromyalgia. I had another ANA 2 weeks ago; this time positive of 1:1280 with high titers. Recently also had a urinalyisis for insurance that revealed protein in urine and RBC in urine. Protein normal range was under 30. Mine was 37. One of my hands has started to swell, and it often feels as though there is a deep itch in my bones in my wrists and thumbs. Rheum says he will reorder lupus screen. I am so confused. Do I have lupus or not? In the meantime, I am a full-time college professor (I write, grade, etc. all the time.) My hands are an agony to me! Frankly, it is even painful to hold my hands the way one must in order to wipe myself in the bathroom. I am also the mother of a 5 yr old. Do you all think it's lupus or just fibromyalgia, which I know is painful, but not as serious as lupus. Some other factors that may be at play here--I went through menopause very abruptly at age 37 and have been on HRT for apprx. 18 mths. I also have history of severe bleeding ulcers that began at age 5, have had apprx. 50 units of blood transfused over my lifetime, so I cannot, of course, take NSAIDS at all. Right now I take nexium (have been on this for nearly 10 yrs and will always have to take it), HRT, and mirapex for fibromyalgia and occassional ambien. I just went off lexapro--tired of all the drugs. Instinctively I know too many are a bad thing. In the meantime, I stay slim, exercise, start each day with a bowl of oatmeal and end each evening with a stout glass of red wine. I welcome your comments and anyone who can speak knowledgeably about this to me.
03-04-2005, 10:12 AM
Please see my reply in Lauri's Lounge
Peace and Blessings
03-17-2005, 06:51 AM
Hang in there, sela. We've all been in that diagnosis hell before, and hopefully you will soon have a definitive diagnosis.
If you ever want someone to talk to, just message me.
03-18-2005, 05:29 PM
I have both as well. When I acquired Lupus my ANA was 1:640, now it's back.. I put the lupus in remission, but then I aquired fibromyalgia in 2001, now I have CNS vasculitis, and Brain problems. When diagnosed I had peri, endo, and myocarditis. I am sorry that you have such pain. I am working on my master's in french and I have a 16 month old little girl and it is very tough but I think that what helps me the most is a high protein diet and cod liver oil. And occassionally a good joint but that is after all resources have failed. I don't know much but those of my friends who have fibromyalgia suffer sometimes brutally and then tolerable.. we just have to take each day one moment at a time. Those of us with these diseases have taken on a great war within our bodies.... we just have to convince ourselves internally that war does not exist, yet we do, the human that has the body, the battlefield.
Don't let the dr's change diagnosis because of fluctuating blood results. ?I have NO antibodies, but Dr Graham Hughes--uk leading lupus man, diagnosed me himself without them
03-19-2005, 12:28 AM
For anyone with more medical knowledge than me: Betsy mentions a high protein diet, but I have lupus nehritis with high protein levels in my urine--doesn't that I mean I shouldn't add protein to my diet in excessive amounts?
Also, Betsy, you mentioned something else as a last resort, I used to partake of that quite often, and it did make me feel better, but now I've developed COPD and bad coughing fits, so I don't think I would be able to do that anymore. It was quite a good relaxation tool, though :lol:
I'm no medic only a retired nurse but i'm pretty sure you are right rhonda--don't take excessive protein===to anybody before changing eating habits or going on any diets PLEASE SPEAK WITH YOUR DR.
we are on lots of medication and he should be aware of what we want to do--diet wise.
04-15-2005, 03:09 AM
Your frustration is the very same that we all have-how do you get diagnosed? Once you receive your diagnosis, what happens? Here's my story....I was diagnosed with SLE 18 years ago when small round patches of hair fell out on my head and I had terrible skin problems. When doing the blood work my dermatologist found a positive ANA, so she did a syphilis test and I had a false positive, as do some Lupus patients. In the past 18 years, I have not had a positive ANA two times in a row. Sometimes it just happens like that. I was told by a very wise Internal Medicine MD that "tests are only tools to lead drs in a direction of treatment, not a diagnostic certainty". I believe that. I have been told that I have Fibromylgia as well, and here's what I think about that....Lupus is a very complex autoimmune disease that affects all systems. Your symptoms may often mirror that of another illness for awhile or those symptoms may become primary for you. Whether Lupus or Fibromylgia, the treatment is very, very similar. They are like half-sisters in the Rheumatic Disease family. Some doctors, like several of mine, have given up on taking tons of tests because, quite frankly, the symptoms are still real even if the tests are negative. One of my favorite drs. finally decided to call my illness-Connective Tissue Disorder, Unspecified. It took some time, but I became ok with that. Keep your head up!
04-16-2005, 02:23 PM
Hang in there. I have 3 children the youngest is seven. I often have trouble with my hands. When it is bad enough I wear wrist braces for a few days and nights so as to rest them. I take celebrex as well. Often times resting my hands as much as I can helps.
04-17-2005, 03:20 PM
You are so right about these auto immune diseases overlapping and being life half-sisters. Mixed Connective Tissue Disorder is also an autoimmune process with symptoms those of Scleroderma, Myositis, Systemic Lupus Erythematosus , Rheumatoid Arthritis and many other autoimmune diseases. It is actually a description of a group of symptoms occurring together. That is why your tests can say one thing at one time and yet another at other times. This is different from a diagnosis that describes the underlying process.
Mixed Connective Tissue Disorder is a disorder of the immune system, which normally functions to protect the body against invading infections and cancers, and toxins. In Mixed Connective Tissue Disorder, as in other autoimmune diseases (such as Lupus) parts of the complex immune system is over-active and produces increased amounts of abnormal antibodies that attack your own organs.
Sometimes MCTD is called Overlap Syndrome or Undifferentiated Mix Connective Tissue Disorder. Some writers discriminate between them claiming that each of these are different. Some argue MCTD is not a distinct entity at all, and is just one of the forms of Systemic Lupus or Scleroderma.
MCTD can affect many parts of the body, including the joints, skin, kidneys, lungs, heart, endocrine, digestive, and nervous system, blood vessels which all are made up of connective tissue. These are the same symptoms that are affected by Lupus as well as other auto immune diseases. Also, there are reports of psychiatric disturbances similar to those found in Lupus. The signs and symptoms of MCTD differ from person to person, with the symptoms of either Lupus, or Scleroderma, or Myositis or other autoimmune disease being most prevalent. Since its manifestations can vary, it is often misdiagnosed (doesn't this all sound like lupus?). The disease can range from mild to life threatening. It can be mild for many years, and then after about 20 years of having the disease a medical crisis may occur. The lungs and kidneys are particularly at risk. Lungs and kidneys symptoms are particularly serious involvement and should be monitored vigilantly by you and your doctor.
MCTD is estimated to attack women eight to fifteen times more frequently than it attacks men. So, it is primarily a woman's disease, as are most of the 80 or so autoimmune diseases. It is hypothesized that there is a hormonal component to the disease, which accounts for the higher prevalence in women. According to American Autoimmune Related Diseases Association, Approximately 50 million Americans, 20 percent of the population or one in five people suffer from some 80 autoimmune diseases. Of these, the majority are women with perhaps 30 million affected.
The treatments for Mixed Connective Tissue Disorder are similar to those used for Lupus and for other autoimmune diseases. There are few studies of the effectiveness of most of the medications since this is such a rare disease and since it affects each person differently. There are medications to control symptoms, as well as anti-inflammatory, immune suppressing, immune modifying, which are used to try and change the course of the illness.
Many medications are used to control the various symptoms. Patients often need to take a combination of medications to eliminate pain and reduce symptoms. These can include aspirin, Tylenol anti-acids, medications for diarrhea, reflux. Heart medications sometimes help control the Raynaud's symptoms (cold extremities). There are ACE inhibitors which can protect the kidney from damage.
Medications for MCTD may also include other non-steroidal anti-inflammatory drugs, antimalarials, corticosteroids, and other immunosuppressants. Anti-inflammatories Steroids, d-penicillimine, and methotrexate are used to reduce inflammation that seems to lead to fibrosis. But, they depress the immune system and there are great risks from the long-term side effects. Since the immune system is suppressed, infection and cancer is a concern. As newer and better drugs are proven effective, these drugs will not be used in the future.
Other treatments used with people with serious symptoms are the cancer and organ transplant medications. These medications also depress the immune system. Presently Cytoxin, a cancer fighting drug, is being tested in many sites around the nation. Even stem-cell transplant, which is a very high-risk treatment because it wipes out the immune system totally, has been used with some success in the few patients who have undergone that treatment. Newer Treatments
Research in Immunology has lead to immune modifying treatments such as Gamma Globulin, Photopheresis, and Plasmapheresis for autoimmune disease. Photopheresis, developed at Yale University, modifies the immune system by using a light source on the white blood cells that contain the immune cells (the T-cells and B-cells). It is the only treatment that has gone through a blinded, phase 3, multi-center trial and found successful for Scleroderma. 68% of the 31 patients treated with Photopheresis showed significant skin improvement as compared with 32% of the 25 patients who were treated with D-penicillamine.
Gamma Globulin has been shown highly effective to stabilize patients with many autoimmune diseases, especially Lupus. Gamma Globulin is made up of the white cells of hundreds of people, and is given intravenously. Side effects from both Photopheresis and Gamma Globulin are transient, mainly flu like symptoms.
Interferon is being investigated as a treatment for pulmonary fibrosis with no know origin (Ideopathic.) The fibrosis from MCTD may not be the same as Ideopathic Pulmonary Fibrosis.
Photopheresis, Gamma Globulin, Interferon, and Plasmapheresis are all newer treatments and are not well understood, but have been found effective in slowing or stopping the illness. These treatments are usually not provided by a Rheumatologist. Photopheresis is provided by dermatologists; Gamma Globulin by an Immunologist; and Interferon Gamma by a Pulmonologist. They may not be a cure, but have put people in a state of remission, without the side effects of depressing the immune system.
I hope that this information has been helpful for you!!!
Take Good Care Of Yourself