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Personal Stories About Lupus

These stories include suspected lupus and lupus misdiagnosis, as well as those with Overlap Syndrome. (Also see:Autoimmune Diseases, Overview of Lupus,Difficult Diagnosis, and Overlap Syndrome)
Aileen: CREST Scleroderma Oh, the wonderful feeling to have a doctor sit there and tell you that you are not imagining things...
Amy B: Limited Scleroderma with CREST I am a full time pharmacist in a pediatric hospital. In February or March of this year, I began to be very intolerable of the cold...
Anna: Linear Scleroderma (Poland) I realized that it is not worthwhile to give up, even during the most difficult moments; it is necessary to fight and to believe that it will be better. If I had not believed I would not have been alive now...
(Italiano) Antea: Sindrome di Sjogren e il Lupus Eritematoso Sistemico Sono Angela dalla provincia di pesaro, ho 29 anni e da ieri ho scoperto di avere la Sindrome di Sjogren...
Antonellina: Lupus (Italy) I am forty-eight, and eight years ago I was diagnosed with lupus...
(Italiano) Antonellina: Lupus (Italia) Ho 48 anni, e otto anni fa mi hanno diagnosticato il lupus...
Archie Bailey: Scleroderma: Sue's Story Time has passed since Sue's death. Only those who have experienced the grieving process can understand...
Bill Jordan: Surviving Boyfriend of Scleroderma Patient Wendy was heartset on dancing that evening even though she was connected to an oxygen machine...
Bobbie Thrasher: Scleroderma I may write a book about my childhood since I am blessed to use my fingers once again...
Carla: CREST Syndrome and Fibromyalgia When I read some of these stories, they scare the devil out of me. Is this really that bad?...
Cindy: Undifferentiated Connective Tissue Disease (UCTD) He seems to think that I have Systemic Lupus Erythematosus, but until my symptoms show more criteria for it, he can't call it that...
Circadiano: Limited Scleroderma with Raynaud's in One Finger (Italy) About ten years ago she was diagnosed with lupus....
Crissie: Surviving Sister of Scleroderma Patient Seek out a doctor who specializes in this disease as soon as you know you have it...
Daphne: Daughter of Scleroderma/Polymyositis/Antisynthetase Syndrome Overlap Patient By early 2005, she began to exhibit Raynaud's phenomenon. She was also having swelling in her face, hands and feet...
Dave Wilcher: Diffuse Scleroderma Early in 1998, I noticed my hands were swollen. I had a hard time gripping the handle of my coffee cup...
Dawna: Raynaud's with CREST? I am in my mid forties and was diagnosed with Raynaud's when I was about twenty-two...
Debbie G: CREST, Lupus, Interstitial Lung Disease and Pulmonary Hypertension It has been a very long and bumpy road at times but somehow through all the hospital visits and other illnesses I have managed to stay ahead of the game by a step or two...
Debbie M: CREST Scleroderma, Systemic Lupus, Rheumatoid Arthritis, Ankylosing Spondylitis, and Fibromyalgia When we are given the CREST diagnosis, does that mean that we definitely will have the tight skin eventually?
Debby B: Systemic Sclerosis I began experiencing unexplained aches and fatigue, along with swelling and numbness in my hands, at the end of 1999...
Debs B: Diffuse Systemic Sclerosis (England) This seems to be a long list of ailments that I have been coping with for years, so the addition of diffuse systemic sclerosis did not really panic me...
Dianne R: Crest, Pulmonary Fibrosis Twelve years ago they told me I would never see fifty and I have beaten them by three years...
Donna H: CREST, Autoimmune Hepatitis, Fibromyalgia I also have degenerative disc disease, osteoarthritis, anxiety/depression/panic disorder, irritable bowel...
Dorne: Overlap and Possibly CREST Since 2002 I have been diagnosed with Lupus, Sjogren's Disease, B12 deficiency, mild pulmonary hypertension, Celiac disease, Type II diabetes and now the specialists are seriously talking about CREST...
Fykah: Systemic Lupus Erythematosus (SLE) I am recently diagnosed with Lupus, yet some complications are still under-diagnosed...
Gertie: Systemic Scleroderma without Skin Involvement or Raynaud's She looked thoughtful for a moment, then quietly asked "Is there hope?"
Hailee Vale: MCTD but Now Undiagnosed I still do not have any proper answers. I have my own theories as to what went wrong and I am waiting to see a rheumatologist...
Heidi: Difficult Diagnosis of UCTD Do these symptoms resemble the beginning symptoms for others who have gone on to be diagnosed with scleroderma?
Hilde: Scleroderma, Lupus, Raynaud's I was diagnosed with lupus, scleroderma and Raynaud's in 1997. I have been through hell and back several times...
Jaci: MCTD and Autoimmune Hepatitis Out of fear of going back to the doctors, I tried just to live with it, whatever it was. What I found strange was that nobody seemed to noticed how terrible I was feeling, not even the doctors...
Jackie S: Overlap Syndrome For as long as I can remember I have had terribly dry skin and a very hoarse voice with dry mouth...
Janice: Daughter of Scleroderma Patient (Brazil) I have lupus and my mom has scleroderma. She is sixty-two years old and does not know that I am trying to understand her illness better...
Jennifer: Surviving Daughter of Overlap Syndrome Patient This letter was written by my dad and was read at my mother's memorial service...
Jerri: CREST Syndrome I was twenty-one years of age when I first noticed that my fingers, toes and lips were turning colors...
Jewell: Diffuse Progressive Systemic Sclerosis When I think back, I had been getting sick for a long time. I just did not know it...
Jill K: Lupus with GAVE (Watermelon Stomach) My hemotologist and GI specialists are very supportive but I am so frustrated at how little any one seems to know about GAVE disease...
Jonty: Son of Scleroderma Patient (Hyderabad, India) In 1997, I secured a seat in a medical college in Hyderabad and enrolled for the MBBS degree course. I then took my mother to meet Dr. Narasimhalu...
Juanita: Lupus I haven't talked to anyone so I feel kind of foolish posting this, but right now at 4 AM in the morning, I needed to get my thoughts out...
Judy King: CREST Syndrome A neurosurgeon performed a Digital Sympathectomy on my right hand and, thank God, my finger was saved...
Julie T: Surviving Daughter of a Diffuse Scleroderma Patient Our family deals with most difficult situations with laughter and humor, even in the most trying times...
Karen A: Morphea Scleroderma I am a 34-year-old female who has been bounced around for 2-1/2 years from oncologists to rheumatologists...
Kate: Possible Scleroderma/Lupus Overlap At some point in that dreary winter month, I began waking up with swollen hands...
Kathi: Scleroderma/Lupus I am forty-three years old and have not been feeling well for ten years...
Kellie: Overlap Scleroderma and Mixed Connective Tissue Disease (MCTD) I am so relieved to read about so many people who have had the same experiences...
Khai: Mother of Diffuse Progressive Systemic Sclerosis Patient From that time until now, scleroderma has dictated our lives. The disease has attacked all lobes of the lungs on the right side...
Kym: Diffuse, CREST Scleroderma, Lupus and Fibromyalgia It all started with Raynaud's in my fingers and toes when I was about nineteen years old, in 1979...
Laira: MCTD, Scleroderma, SLE, Lupus, CREST, Lymphoma I was just seventeen when I was told I had rheumatoid arthritis...
Laura M: UCTD A rheumatologist told me I did not look sick and to "get a life"...
Laurie (Bioteach): CREST Syndrome My first symptoms of this disorder began with Raynaud's when I was in my mid twenties...
Leslie R: Scleroderma, Vitiligo, Lupus, Anemia, Hypertension and Type 2 Diabetes He told me that I have scleroderma and explained what this disease is about. After suffering so long I finally got some answers...
Lisa C: Limited Scleroderma My mother has rheumatoid arthritis (RA) and my thirteen-year-old daughter has what is believed to be early lupus...
Lulu: Lupus and CREST Scleroderma I thought that I was getting lazy. It took all I could do to just get through the day...
Lynn: Lupus, Scleroderma, Sjögren's and Polymyositis Overlap I am going to start to see the doctor more often and take better care of myself...
Lynsey: Daughter of Patient with Scleroderma and Lupus My mother has had all but four fingers amputated, all of her toes on her left foot and her right leg up to her knee has been amputated...
Mariposa: Progressive Systemic Sclerosis I have finger ulcers, also a second degree esophagitis, but I should say that about a year ago it started receding thanks to the doctors that follow my case...
Mary S: Diffuse Scleroderma When he called the internist I was in the office and I heard him say, "I think I am sending you a patient who has scleroderma but I am not sure. She has a lot of the symptoms."
McKenzie: Scleroderma with CREST I felt numbness crept down both my legs. I said, "I can't feel my legs!" and sat down on the floor...
Mick Breske: UCTD/Lupus I felt I was being treated as some dumb blond. Finally one day I was referred to a rheumatologist...
Missy S: Lupus, Scleroderma, CREST and Depression They say I am not eligible for a medical card or disability. I have been fighting for four years...
Myrianisa: Daughter of a Severe Scleroderma Patient My mother was diagnosed with scleroderma six years ago. At the same time, she was also diagnosed with lupus, Raynaud's, MCTD, pulmonary fibrosis and fibromyalgia...
Nathalie: Lupus/Scleroderma I arrived at the hospital with two black fingers. They had gangrene and I was very worried about having an amputation...
Papa V: Lupus, Antiphospholipid Syndrome, Myasthenia Gravis, and Scleroderma About thirty years passed, and then—BAM !—I got a heart blockage, stroke, liver biopsy due to elevated enzymes, skin rash, high blood pressure, very high ANA..
Pat: CREST Scleroderma They had to do surgery and take calcium deposits out of my knee...
Patty S.:Localized Scleroderma, Pulmonary Hypertension and Sjögren's I have quit my job and reduced my stress a hundred percent. I am doting on my children and my husband...
Peggy H: Undiagnosed MCTD? I have been told for twenty years that I might have Mixed Connective Tissue Disease (MCTD), but I haven't been definitely diagnosed...
Rafvis: Systemic Scleroderma (Italy) There were practically times when I had no sense of touch...
Robin: Difficult Diagnosis My rheumatologist said I have scleroderma, but just lately she said now she is not sure if it is that or fibromyalgia...
Robin E: Scleroderma, Lupus and Raynaud's I do not know if I can describe what I am going through because it changes each week, if not each day...
Rosemary F: Surviving Daughter of Diffuse Scleroderma Patient She tried to explain it, but it was hard for me to comprehend the disease's symptoms. Mom said that it was the same thing that her oldest sister died from...
Shar: Lupus, Scleroderma, Sjögren's, and Fibromyalgia Was my battle with Hepatitis C worth it? Yes!
Shirley S: Surviving Spouse of Scleroderma and Lupus Patient My husband John had scleroderma, and he passed away on November 8, 2001...
Silezia: Mixed Connective Tissue Disease (South Africa) I believe that if we try to feel positive about our life and the cards we are dealt, then we can manage our disease most effectively...
Stacy M: Scleroderma and Lupus I am only a thirty-three-year-old male and I feel like I am eighty years old...
Susan M: CREST, Raynaud's and Hashimoto's (Canada) I have a fabulous doctor now and she has brought me from a very dark place to one where I can again see the sunshine.
William M: Scleroderma or Lupus I had to give up my career of being a registered nurse (RN) over two years ago due to total disability...
Yuri: CREST Syndrome Now, one month before my nineteenth birthday, I live with CREST Syndrome, rheumatoid arthritis, acid reflux and anemia...
 
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