| What is Scleroderma? (MAIN MENU) |
| This page was written by Shelley Ensz, and has not yet been medically edited. See Disclaimer. |
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| Difficult Diagnosis |
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| Patient Stories: Difficult Diagnosis |
| 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... |
| Andi P: UCTD and Possible Scleroderma It is believed that I do have an autoimmune disease they are not sure if it is systemic or not, but I know what I live through on a daily basis... |
| Anna: Linear Scleroderma (Poland) I realised 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... |
| Barbs: Systemic Sclerosis, CREST, Raynaud's So from the outset, diagnosis took 20 years... |
| Betty M: CREST Syndrome I was in so much pain for so long that I tried to take my own life. This only ended me up in a mental institution where I was given shock treatments that wiped out my whole memory... |
| Brenda: Limited Scleroderma, CREST, Raynaud's I was sick for five or six years, telling doctors how much pain I was in... |
| Buggzy: Autoimmune Hepatitis, Fibromyalgia, Undiagnosed I am really desperate to get some answers or to hear from others in the same boat as me... |
| Carla: CREST Syndrome and Fibromyalgia When I read some of these stories, they scare the devil out of me. Is this really that bad?... |
| Carol F: CREST Syndrome I feel so alone right now and it would be nice to talk with someone who understands what I am going through... |
| Cathy: Probable CREST Scleroderma It really starting going bad for me in November of 1999. I work on rural mail delivery and live in Quebec, Canada... |
| Cathy B: Spouse of Scleroderma Patient I am looking for other wives who might be in the same need I am in, who also want someone to talk to and share stories or ideas with... |
| Christine S: Diffuse Stage 2 Scleroderma I did not know whether to break out the tissues or the champagne or both! I was so happy that finally someone had agreed that had something wrong with me, and that it had a name... |
| CJ: Fibromyalgia, UCTD, and Systemic Sclerosis I have been going to doctors for over five years now and have just recently been diagnosed... |
| Claudia: Systemic Scleroderma Nature is wise, no doubt about it, when something is wrong with our body we have to pay attention... |
| 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 S: Undiagnosed and Brother of Scleroderma Patient A small black spot appeared on my left index finger around Easter of 2004. It has not grown in the past six months, but it also has not healed... |
| Dawn S: CREST Syndrome The majority of doctors that I have seen have been unhelpful, unsympathetic and downright rude to me... |
| Dawna: Raynaud's with CREST? I am in my mid forties and was diagnosed with Raynaud's when I was about twenty-two... |
| Denise E: Diffuse Scleroderma I was first diagnosed with diffuse scleroderma in February 2002, but my symptoms began subtly in the summer of 2000... |
| Dienne: Morphea plus possible CREST I finally saw a rheumatologist about 6 years ago, who told me I had Raynaud's and Telangiectasia (spider veins) on my hands... |
| D.M.: Son of Mother with Doubtful Diagnosis (Kosovo, Yugoslavia) I will do my best to help my mother. She is the only person I have in this world... |
| Donna D: Systemic Scleroderma No one shares a timeline with me or will tell me what to expect next... |
| Dwight: Surviving Son of Scleroderma Patient My dear mother, Drema L Shaver, passed away one year ago today... |
| Elaine GH: Limited Systemic Sclerosis I tell everyone I meet about scleroderma. I have joined two support groups and bought all three editions of Voices of Scleroderma... |
| Emily: Undiagnosed (Switzerland) I have had scleroderma for almost six years. For over four years doctors haven't said anything, surely because they do not even know what exactly is happening to me... |
| Erica R: Raynaud's Syndrome & Telangiectasia I noticed that in the middle of class my hands would go numb. I had to run out to my truck to turn on the heat... |
| Fionna: Undiagnosed Scleroderma/Raynaud's My problems began in 1999, after a particularly stressful twelve months, at age thirty-six... |
| Francia: Undiagnosed I have a lot of pain in the back of my neck and problems with my throat when I eat... |
| Gena P: Morphea I was diagnosed with morphea at the age of twenty-seven. It was a long process for diagnosis... |
| Gertie: Systemic Scleroderma without Skin Involvement or Raynaud's She looked thoughtful for a moment, then quietly asked "Is there hope?" |
| Gina: Morphea or Linear Scleroderma I really try to put it out of my mind and be thankful that it is not systemic. But, every time I notice new areas turning color it really worries me... |
| Gordon: Undiagnosed and Raynaud's I am a forty year old male and I am quite certain I have scleroderma even though I have not yet been diagnosed... |
| 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? |
| Iceback: CREST or Limited Scleroderma Never having heard of scleroderma, I never really asked any questions when he told me and went home to look it up on the Internet... |
| Janice E: CREST/Fibromyalgia At some point I came to the realization that what I was feeling just could not be normal. By this time my hands were swelling... |
| Jenny: CREST Scleroderma My symptoms started to appear over ten years ago, but I was only recently diagnosed... |
| Jenny M: Morphea Scleroderma I was told it was a fungus, then that it was clearly all in my head. I went to a dermatologist who told me I had Vitiligo, and then that it was lichen sclerosis... |
| Jill: CREST Scleroderma and Sjögren's I could not face being in or visiting a hospital so I discharged myself from his care. I decided that I have lived with it this long so will simply get on with it again... |
| Jody: Fibromyalgia/Difficult Diagnosis In Sudan, I was on IV for heat stroke and food poisoning. And in Thailand, at the end of March, it all came to a crashing halt... |
| John B: Eosinophilic Fasciitis or Scleroderma-Like Condition I have knee contractures that prevent me from walking, very tight skin in the legs... |
| 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 Dee: Diffuse Scleroderma My skin began to harden and turn a shade of brown... |
| 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... |
| Kathi: Scleroderma/Lupus I am 43 years old and have not been feeling well for 10 years... |
| Katy: Morphea Scleroderma It took nearly a year to get my diagnosis. The first two doctors told me I had ringworm... |
| 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... |
| Keri: Undiagnosed I have been living with back pain, stomach problems and skin problems since I was a teen... |
| K. Thompson: Daughter of Scleroderma Patient He had been having problems with his heart and had to have stents put in for blocked arteries... |
| Keua: Possibly Scleroderma I finally decided to see my doctor when I could not even straighten my fingers without pain and discomfort and was feeling extremely lethargic... |
| Kevin: Undiagnosed Scleroderma, Lupus, Mixed Connective Tissue Disease, Rheumatoid Arthritis, etc.? All I do is live, sleep and breathe the pain in my hand... |
| Kristen: Diffuse Scleroderma I originally thought I had CREST, but it has now been confirmed that I have Diffuse Scleroderma... |
| Laura M: UCTD A rheumatologist told me I did not look sick and to "get a life"... |
| Laura W: Scleroderma, Sjögren's, Raynaud's and IBS I am glad to finally have an answer after years of tests, with no results... |
| Leeben: Limited Scleroderma and CREST I won't go into how many doctors I had to visit before someone took me seriously; it was a total nightmare... |
| Lisa R: Difficult Diagnosis - Scleroderma? My story started five months ago when I woke up one day and out of nowhere, my fingers were tingling and a bit swollen... |
| Liz: Localized Scleroderma: Morphea Over the next eight months I was misdiagnosed by three different doctors who told me I had Tinea Versicolor (a type of fungus)... |
| Lorna: Undiagnosed Scleroderma? When I went to the hospital this young doctor came in and looked at my hands. He said that he thought I had Raynaud's and scleroderma... |
| Lorrie: Limited Scleroderma/CREST At first I thought, "Oh my goodness! I am going to die." But my doctor assured me that I could very likely live to be an old woman... |
| Lucy's Mum: Mother of a Linear Scleroderma Patient I googled 'my daughter has thinning hard skin' and this sclero.org web site came up... |
| Lynn S: Diffuse Scleroderma and Pulmonary Hypertension No one believed me; I guess because I look healthy. I would always hear, 'You are too young for this!' It is hard for people to understand... |
| Madhu Bhatia: Morphea (Delhi, India) When will I get respite and correct diagnosis? Pain on the wound is excruciating. I am entangled in a web of doctors with no clear diagnosis... |
| Marie C: Surviving Spouse of Scleroderma Patient It took one year of multiple misdiagnoses before it was determined that he had scleroderma (SD)... |
| Marla: Difficult Diagnosis and Anxiety I have never been diagnosed with Raynaud's but one of my toes turns white sometimes... |
| Marthie D: CREST Scleroderma I live in a small town, which developed around a chemical and petrochemical industry in this area in South Africa... |
| (Italiano) Maya: Sindrome di Sjögren Ciao a tutti, sono una ragazza di 27 anni erano sette anni che lamentavo disturbi di vario genere... |
| Michela P: Swelling in Hands and Feet I do not feel a lot of pain, but I feel like my skin is burning on my hands... |
| Michelle (JR): Morphea Scleroderma My doctor had never seen anything like this, and prescribed some cortisone cream assuming it was a fungus and it would disappear in a week... |
| Mick Breske: UCTD/Lupus I felt I was being treated as some dumb blond. Finally one day I was referred to a rheumatologist... |
| Mo: Mother of Undiagnosed Girl We have an 8-year-old daughter whose symptoms have stumped our pediatrician... |
| Monica: MCTD This diagnosis is a bittersweet one for us. Yes, after seven years of hell, we now have a name... |
| Moomary: Diffuse Scleroderma The endoscopy showed that my esophagus does not close at all when I swallow. The surgeon suggested that he could do a Nissen Fundoplication... |
| Myle: Morphea I went to a dermatologist, who at first told me it was some type of fungus and treated me accordingly. But the spot kept on growing and changing in colour and aspect... |
| (Español/Spanish) Myle: Esclerodermia Morfea Fui con un dermatólogo que en principio me dijo que era un hongo, y me envió un tratamiento para los hongos, pero la mancha seguía creciendo, y cambiando de color y aspecto... |
| Nan: Mixed Connective Tissue Disease and Fibromyalgia Finally after several years of struggle, one wonderful doctor at OSU got gutsy and gave me the MCTD diagnosis... |
| Nancy H: Raynaud's I also have the beginning stages of Crohn's, panniculitis, rheumatoid arthritis, and now Raynaud's... |
| Naomi: Systemic Sclerosis and Pulmonary Fibrosis My doctor is astonished of my attitude considering I have Raynaud's, my fingers are curling up and I have lost my nails, pulmonary fibrosis... |
| Nettie: Systemic Scleroderma with CREST Up until now I have done very well at pretending not to be ill... |
| Nina: Fibromyalgia, Raynaud's, Limited Scleroderma/CREST That is when I found ISN! The volume of reliable, informative, trusted information that I found on this site completely overwhelmed me... |
| Olga: Difficult Diagnosis Recently I came across www.sclero.org while researching my illness that has not been recognized neither in my native country nor in Italy, where I moved twelve years ago to escape from cold winters which have destroyed my skin... |
| Pat: CREST Scleroderma They had to do surgery and take calcium deposits out of my knee... |
| 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... |
| Peter: Burn Survivor with Scleroderma My left hand had contracted so much that I had to wear a protective piece of plastic on my palm to prevent my fingernails growing through the skin... |
| (Italiano) Pino: Sospetta Scleroderma Scrivo per mia madre. Siamo entrati da poco in questo tunnel. Tutto inizia l'anno scorso con la diagnosi della sindrome di Raynaud : mani indolensite, colore violaceo... |
| Ro M: Scleroderma After six months of suffering, I have just been diagnosed with scleroderma. I was constantly tired, run down and plagued with infections... |
| Roberta A: Systemic Sclerosis/Overlap Two rheumatologists both said because I did not have thick skin I did not have systemic sclerosis... |
| 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... |
| Rose M: CREST Syndrome I was finally correctly diagnosed with CREST after two years of thinking I was going crazy... |
| Sheena: Systemic Sclerosis with Watermelon Stomach None of my doctors could understand how all my other complaints went with the watermelon stomach, but I knew they did... |
| Sherrell: Possible Scleroderma When he examined me, he mentioned the possibility that I may have scleroderma. He said my fingers and face showed signs of this disease... |
| Soose: Limited Scleroderma I may have had scleroderma for the last year and a half or two years and did not know it... |
| Sorin: Cousin of Undiagnosed Patient I live in Romania and I have a cousin who has symptoms that have been described as very similar to those in scleroderma... |
| Stefan: Progressive Systemic Sclerosis I have been moving towards this diagnosis beginning in 1987 with a heart failure resulting from cardimyopathy... |
| Sue "SASA": Morphea Scleroderma I am a thirty-eight-year-old woman living in South Australia, where there is a high incidence of morphea... |
| Sue D: Diffuse Scleroderma Pain developed in my hands, then I noticed pain in my knees, then my shoulders, down my back, elbows, hips, feet... |
| Susie L: Raynaud's (and Scleroderma, too?) I have been told that I "probably" have scleroderma in the early stages by one doctor, that it is unlikely by another, and that I almost certainly do have it by yet another... |
| Tammy M: Linear Scleroderma and Vitiligo When I was first diagnosed there was no such thing as the Internet. I always felt that my family and I were the only ones in the world who knew what scleroderma was... |
| Teresa: Scleroderma I was just diagnosed a few hours ago. Tears are streaming down my face... |
| Tracy: Undiagnosed Please share your story with me. I am really tired of waiting and wondering... |
| Stephanie D: Scleroderma/Heparin-Induced Thrombocytopenia If I receive heparin again I will certainly die... |
| Swede: UCTD or Hypochondria I have been experiencing severe pain in my feet and ankles for the last two years... |
| Sylvia: Surviving Mother of Scleroderma Patient She had this disease from 2001 without the doctors realizing it... |
| (Italiano) Vanecaro: Sclerodermia o Sclerosi Multipla Nel 1997 o presso un forte rasfredore, a la settimana, caminavo e perdevo il equilibrio... |
| Wade: Scleredema vs Scleroderma At first look, my doctor thought I might have scleroderma, but after doing blood work, they said my tests came back negative... |
| Wes C.: Brother of Systemic Sclerosis Patient Just days ago, my sister Michelle was diagnosed with systemic sclerosis, after being misdiagnosed for almost two years... |
| Yolima: Diffuse Scleroderma I was misdiagnosed for more than a year with so many diseases and given all types of medication for different problems except for the real disease... |
| Yuri: CREST Syndrome Now, one month before my nineteenth birthday, I live with CREST Syndrome, rheumatoid arthritis, acid reflux and anemia... |
