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Patient Stories: Difficult Diagnosis

Alex U: Swollen Salivary Gland (Italy) I have spent many months with the swelling on the left side of my face, even my ears, and I think I am developing osteoarthritis…

(Italiano) Alex U: Ghindola Salivare Allungata (Italia) Inoltre ho passato molti messi con la parte sinistra gonfia: l' orecchie, niente il menisco infiammato con una piccola artrosi…

Alexandra: Scleroderma My scleroderma symptoms arrived in great style: reflux, itchy swollen skin, joint and muscle pain and tiredness. Plus hundreds of little red spots (telangiectasia). My mouth was tight and getting smaller too…

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 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…

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…

Deborah T: Scleroderma No doctor seems to help me. My doctor just says I have so many problems its hard to know what to do…

Dee B: Limited Scleroderma/CREST Syndrome I also had the problem with people saying I was a hypochondriac, as at that stage all the doctors I saw found nothing wrong with me, but I constantly felt weary and ill…

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 C: Undifferentiated Connective Tissue Disease (UCTD) For the most part I have still been doing very good. Some little setbacks here and there but for the most part much better…

Donna D: Systemic Scleroderma No one shares a timeline with me or will tell me what to expect next…

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…

Dwight: Surviving Son of Scleroderma Patient My dear mother, Drema L Shaver, passed away one year ago today…

Edith: MCTD with En Coup de Sabre/Parry Romberg's, Lichen Sclerosus, Rheumatoid Arthritis, Sjogren's My GP is fabulous, but at the end of the day it is not enough. I would be lost without people like you…

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…

Elizabeth O: Linear Scleroderma I am afraid also because it goes through my left eye, which I see becoming smaller…

(Español/Spanish) Elizabeth O: Esclerodermia Lineal Me da temor porque pasa por mi ojo izquierdo, que cada día noto más pequeño…

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…

Heather A: Scleroderma (South Africa) My fingers started to curl up and I could not wear any rings on my fingers anymore as they were so swollen…

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…

Iona: Parry Romberg Syndrome (Romania) That morning when I woke up I a rash under my right eye. It was about 1 centimeter, but I thought it was because I cried the night before so I did not see it as a problem that time…

Janet Q: UTCD or MCTD I also experienced new symptoms; joint pain, muscle aches, headaches, very painful carpal tunnel syndrome in both hands, back and neck pain, the list grew on and on…

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…

Karligash: Systemic Scleroderma (Republic of Kazakhstan) Young, beautiful, full of hope and expectations for my life, for happiness and love — that was me, 19 years of age…

(Russian) Карлыгаш: системная склеродермия (Республика Казахстан) Молодая,красивая,полная ожидания от жизни счастья,любви такая я была в 19 лет…

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…

Kirasia: Diffuse Scleroderma (Italy) I have been on sick leave for around twelve months in the last three years, and I risk a fifty percent reduction of my salary, which would be a big problem as I live on my own…

(Italiano) Kirasia: Sclerodermia Diffusa (Italia) Stò raggiungendo i 12 mesi di malattia accumulati negli ultimi 3 anni,e rischio la diminuzione dello stipendio del 50% che sarebbe un ulteriore problema, vivendo io da sola…

Kristen: Diffuse Scleroderma I originally thought I had CREST, but it has now been confirmed that I have Diffuse Scleroderma…

Kristi U: Systemic Scleroderma We sold our motel business because it hurt me so bad to work each and every day…

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…

Luca: Difficult Diagnosis, Incomplete (Italy) These are my symptoms: joint pain, bone pain, fever, the inside of my mouth is irritated, as if I had burned it…

(Italiano) Luca: Dificulta Diagnosa Incompleta (Italia) Ma io stó davvero male e non so piú che fare, vivo davvero male. Addirittura mi hanno detto che sono sintomi immaginari, ma non é cosí…

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)…

Maritere: Mother of Daughter with Morphea It might have been just a regular bruise, but instead of swelling, the skin began to sink, perhaps just milimeters but it was sinking…

(Español/Spanish) Maritere: Madre de una niña Morfea (Mexico) Hubiera pasado por un golpe, pero en vez de inflamarse, se empezó a deprimir, quizá sólo milímetros, pero estaba hundida…

Marla: Difficult Diagnosis and Anxiety I have never been diagnosed with Raynaud's but one of my toes turns white sometimes…

Mars: Scleroderma with Full Gastrointestinal Involvement I finally started total parenteral nutrition (TPN, or tubal feeding) in May 2010 and it was an absolute success…

Marthie D: CREST Scleroderma I live in a small town, which developed around a chemical and petrochemical industry in this area in South Africa…

Matilda: Systemic Scleroderma (South Africa) I don't think there is a lot of support in South Africa and I would actually like to start a group where people with the same disease can meet and discuss how they cope with the illness…

(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…

Michelle P: Sjögren's Syndrome I went to see Professor Hughes in London in 2010…

Mick Breske: UCTD/Lupus I felt I was being treated as some dumb blond. Finally one day I was referred to a rheumatologist…

Missy M: Morphea By this time it had spread onto my shoulders, down my face, under my breasts, and down my belly. It rapidly went all around my neck, behind my ears and all the way to the tip on my chin…

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 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…

Queenie: Systemic Sclerosis with Pulmonary Fibrosis (Liverpool) It was only when my mother went onto the internet looking at illnesses that had all the symptoms that I was showing that we found Raynaud's and scleroderma…

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…

Sheila Z: Scleroderma I would like to first say that this site has been a great help for me to understand what is happening to my body and my life…

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…

Sibel: Scleroderma and Raynaud's (Turkey) Changes in my skin were making me look different in the mirror…

Sonya D: Surviving Daughter of Systemic Scleroderma Patient (Portugal) She had difficulty eating, drinking and digesting her food, but yet doctors had no clue…

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…

Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information…

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…

Vali: Mother of Linear Scleroderma Patient (Italy) A dermatologist diagnosed her with Linear Scleroderma, but another one said it was Linear Lichen Planus. My daughter's feet, when she walks, turn inside, and she is often warm, but doesn't have a fever…

(Italiano) Vali: Sclerodermia Lineare (Italia) Un dermatologo a diagnosticato una Sclerodermia Lineare. Un'altro invece: -Lichen Planus Lineare. Mia figlia ha i piedi che quando cammina li butta in dentro, e si sente spesso accaldata ma febbre non ne ha…

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…

Yvette: Undifferentiated Connective Tissue Disease (UCTD) and Thyroid Cancer For now, I have accepted that the diagnosis of my core problem is not important. The way I choose to deal with it is…

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