| Postits Archives 1 May, 1999 -
March, 2000 Postits Archives 2 March, 2000 - May, 2001 Postits Archives 3 May, 2001 - October, 2001 Postits Archives 4 Oct , 2001 - October, 2002 Postits Archives 5 Oct, 2002 - December, 2002 Postitis Archive 6 Jan, 2003 - March, 2003 Kate's original Postits 1996 - May, 1999 |
|
address: SallyDee@aol.com
type: localized (Morphea/linear)
Date: 05/10/01
Time: 08:53 PM
Morphea patch near breast? My first patch appeared at the outer edge of my left breast- not quite breast, not quite armpit. I experienced shooting pains heading toward the nipple, deep, deep itching- the kind you get when you have a healing bee sting, and increased temperature at the site- more than warm, HOT actually. Still in the "figure out what this is" stage. A dermatologinst blurted out "that's morphea" but gave me NO information regarding it at all. Do these symptoms sound familiar to anyone? Thanks so much!
address: diandgraham@aol.com
type: localized (Morphea/linear)
Date: 04/11/01
Time: 03:22 PM
Hi - I just thought I would write my thoughts down and share them all with you. I live in England and have had morphia since I was 12 (I am now 36). I dread summer every year as that is when I like to wear short sleeves and everyone comments on my "Bruises". I have scars on my trunk (front and back) and on my arms and upper legs - luckily it has never come on my face although I do have some dark patches when I have been in the sun for too long. There is very little support for this condition in England and I have found out more information since accessing the web than my local doctors have ever told me. I don't know anyone else with this condition and it would be nice to share stories with other sufferers - so if you have a minute please E-Mail me at diandgraham@aol.com
address: JWNK@MSN.COM
type: localized (Morphea/linear)
Date: 04/10/01
Time: 04:36 PM
My son has morphea and it is spreading. His mother has been very active in seeking out the best treatment for him and we are trying different medications now. 4/10/01
address: lemaustin2@aol.com
type: systemic (diffuse or CREST)
Date: 04/08/01
Time: 11:52 AM
Hello,
I know you aren't doctors, and I'm not asking for a diagnosis, but I was wondering if I could have scleroderma. Last weekend, I heard a woman speak on the radio as I flipped through the channels in my car. She had scleroderma, and the symptoms she described sounded similar to mine. How long can you have scleroderma without knowing it? With my last pregnancy-13 years ago-I developed joint pain in my wrist, fingers, hands and knees which lasted for eight months. It started when I was seven months pregnant. I went to a rheumatologist who ran all sorts of tests and found nothing. After I stopped breast feeding, the pain mysteriously went away so I figured it must have been hormone/pregnancy related. Then about a year or two later and every year or so after, I will get pain and stiffness in my fingers and toes (severe pain) which lasts for a few months and then goes away. When my fingers or toes are sore, they look puffy. Since the doctors (my family physician and the rheumotologist) couldn't find anything, I felt like they thought I'd made it up. I haven't told anyone other than my family that I still have the problem. I've also changed general practioners since then, so my GP doesn't even know there ever was a problem. I've had gastrointestinal problems (on again/off again diarrhea) all along which I was told was probably due to colitis. I recently developed very tiny dark red spots all over, and lately, my feet have had tingling episodes. I have not done anything to cut off the circulation like sitting on my feet. During these episodes, the foot has no feeling in it, and then after the tingling goes away, it hurts. This has just started happening. Does this sound like scleroderma? I don't particularly like doctors, and I'm not sure I will go to see one even if this were scleroderma. I know enough about doctors to know they make a lot of mistakes.
address: dhickey@one.net.au
type: systemic (diffuse or CREST)
Date: 03/29/01
Time: 01:48 AM
The best thing I ever did was to send in my story to the CREST page. I was a very lonely person, thinking that there was no-one who understood how I felt, but how wrong I was. I now have many email friends who do know what it is like to live inside a body with Scleroderma. It has made an enormous difference to me, it is wonderful to turn on my computer and see their names come up on my screen. To any-one out there who is lonely, take the time to write down your story and send it in. Any-one who has read my story on the CREST page and has been unable to get in touch with me it is because my email address has been changed. It is now dhickey@one.net.au Have a happy day Aileen
address: balexander33@yahoo.com
type: localized (Morphea/linear)
Date: 03/16/01
Time: 04:54 PM
My name is Beth, I am a 36 year old female living in Houston, Texas. In 1992 I was living in Germany when I noticed a small brown spot on my abdomen. Being so far away from the states I waited it out hoping it would go away. I even thought maybe it was ringworm and tried all different kinds of over the counter creams to try and make it go away. It was six months before I returned to the states at which time I went to my doctor for him to tell me I had ringworm and to try me on several diffent meds that didnt work. At that time I only had 3 small spots and I wasnt too concerned. In early 1994 the spots spread like wild fire to a total of almost 100 spots. I went to a dermatologist and he told me within minutes that I had Morphea, after a biopsy it was confirmed. Since that time I have been to several doctors all trying different treatments ranging from UV, plaquenil, and injections of coritsone. None of these have made any improvement in my condition and I am now to the point of giving up hope. These spots are spreading to my face and my arms and legs and I am very embarassed when people notice them. Does anyone know if these things ever go away and has anyone ever had a sucessful treatment? I would appreciate any help at all. Thanks
address: mminot@home.com
type: systemic (diffuse or CREST)
Date: 03/16/01
Time: 02:38 AM
My husband Ken has scleroderma and is currently in the hospital ICU fightng off the fluid buildup around his lung and heart.
address: trudiannr@hotmail.com
type: systemic (diffuse or CREST)
Date: 02/12/01
Time: 04:19 PM
I had my wrong e-mail address on my last posting about my mother.
address: trudiannr@hotmal.com
type: systemic (diffuse or CREST)
Date: 02/12/01
Time: 02:47 PM
My mother is currently in the hospital and has been diagnosed with Scleroderma. She is on a respirator and dialysis. She has been in the ICU for 16 days and a ventilator for 15. The doctor seems to think that she can recover from her current condition, but she may require dialysis. I was told since her symptoms occurred quickly she had "expolsive" Scleroderma. Anyone have any experiences like my mother? Until this, she has been relatively healthy and active.
Thanks.
address: enterprise32@juno.com
type: systemic (diffuse or CREST)
Date: 02/08/01
Time: 04:25 PM
Hi my name is debbie and my mother Lillian has suffer with scleroderma for the past twenty years or more. It was not until about 10 years ago that a name was given to her illness. My mom has alway been a beautiful women. ( she still is) the scleroderma has turned her skin wrinklely and hard. her lungs have scars tissue on them and she has been on oxygen. It has been hard on all of us but we are a family that trust in God and stick together. My mom also has raynauds syndrom and has been on more medication that I care to name. the reason for my post is to help my mom find support from other out there who are suffering just like she is , breathging problems, heavyness in the chest, burning at night and more. Please feel free to email her at enterprise32@juno.com she would love to chat with some of your. We all need to keep encouraging each other thatnk you debbie
address: audloe@aol.com
type: localized (Morphea/linear)
Date: 01/05/01
Time: 06:42 PM
About a year ago, our 20 year old daughter, Diana was diagnosed with Morphea. We found a special UVA1 light treatment in Birmingham, Alabama. The Dr. who treated Diana was DR. Craig Elmets, who specializes in treating Scleroderma patients. Diana moved to Birmingham and underwent treatments for around 6 months. Dr. Elmets says that she is his success story! Her Morphea appears to be in remission, and we believe it has been healed. She's doing well, but still has the "scars" on her forehead where the pores closed up and also on her head where the follicles closed. If anyone needs to "talk" or wants any information, I'd be happy to answer whatever questions I can. Thank you. Audley
address: birdie1@bigpond.com
type: systemic (diffuse or CREST)
Date: 01/01/01
Time: 05:59 AM
52 Buna Street, Maroochydore 4558 Sunshine Coast Queensland Australia
address: lorreg@ctcweb.net
type: systemic (diffuse or CREST)
Date: 12/30/00
Time: 07:26 PM
I have had the Crest Syndrome for 17 years, it can be handled, My skin is loose and soft, I do have problems with my liver other than that I am in great shape for a 67 year old. With the right Doctor, medicine and "it won't get me down" attitude it can be beaten, I am living proof.
address: quesexy11368
type: systemic (diffuse or CREST)
Date: 12/02/00
Time: 09:02 PM
Hi, my name is Alexandra Suarez. I'm from Corona, Queens New York. I am 19 years old and I have Crest. I've had it since the age of 12. Crest has not affected any of my organs, but i do have calcium deposits in my fingers. Other than that I don't ever get sick, or have any pain. I work for the New York City Police Department, and im attending John Jay College of Criminal Justice. I have a one year old daughter also named Alexandra. If anyone has anymore information for me about Crest -please write back......
address: WCarp123@aol.com
type: systemic (diffuse or CREST)
Date: 11/29/00
Time: 07:50 PM
I have it in my lungs. would like a support group.I am going on 80 and pressure in my lungs is 90%. aaanyone with the same please write me
address: klns@voyager.net
type: systemic (diffuse or CREST)
Date: 11/29/00
Time: 07:48 PM
My name is Lynda, I am 37 and a mother of 2 boys, I have been married to a wonderful man for 14 years. I like to be involved with my childrens activities. I am on the board of directors for pop warner football, baseball, and am coach of the junior bowling leagues in our town. I still am able to work full time in customer service and have a very understanding employer also.
I was diagnosed with Scleroderma (CREST) about 6 years ago. I had hurt my hand playing a co-ed softball tournament and it wouldn't heal. I went to many different doctors until they found out what was wrong. Since then I have had surgery on that finger for a bone infection that wouldn't heal, a blood transfusion, my hemoglobin count was only 5.6. The doctor said after doing an upper and lower GI that my stomach looks just like my face with the red marks all over it. I then had a digital sympathectomy done on both hands, to remove the nerves on the arteries to help my circulation to prevent the finger ulcers. They worked great for about 6 months, then the sores came back,the doctor said there was a chance the nerves would come back. I also take medication for my esophagus the acid reflux.
My daily medications consist of Procardia XL 60 mg 1x day, Prilosec 20 mg 2x day, Imdur 20 mg 1x day, iron, vitamin E.
I am very interested in hearing other stories about CREST and especially how people have helped their finger ulcers heal. We have tried many different things that do not work. Please write if you have had success in this area.
address: danielle@elmhurst.edu
type: systemic (diffuse or CREST)
Date: 11/16/00
Time: 05:55 PM
Does Minocycline cause Lupus? and if so, under what conditions will it cause this disese to be present? I am going to take minocycline (low dosage 50 mg) for acne...doc wants to keep me on it for 3 months. What is the percentage of risk of me getting Lupus?
address: jenckesn@aol.com
type: systemic (diffuse or CREST)
Date: 11/13/00
Time: 08:05 PM
I'm Nancy J, 59, retired teacher. I've had Raynaud's for almost 40 years. I've lost a finger and a toe. I have CREST. I help my esophogus by dilating it myself. My latest problem is with my feet. 15 months ago one foot swelled up; I couldn't walk. They sent me to several doctors, finally opening foot up in case of infection. A year later same foot swelled again. I then had bunion and hammer toe surgery to help pressure points. Two weeks ago my other foot swelled up, MRI showed lots of fluid and granulation around all pressure points. What to do? Swelling seems to be going down somewhat after two weeks and an antibiotic. Does anyone else have foot trouble like this? If so, please write.
address: gordonview@msn.com
type: systemic (diffuse or CREST)
Date: 11/03/00
Time: 04:14 PM
The woman I am going to marry, Pamela, has diffuse and is starting a treatment with methotrexate (sp?). This is a form of chemotherapy drug, and I was wondering if anyone has gone through this treatment. With all the options (or guesses) of how to treat scleroderma, I was wondering if anyone has input on this. Thank you. Jess.
address: Eddyhawk_2000@yahoo.com
type: systemic (diffuse or CREST)
Date: 11/02/00
Time: 08:48 PM
I am 15and i just wanted to ask for everyone's prayers for my Aunt Lynn, who has Scleroderma. I love you Aunt Lynn!! Love, Edward!
address: tandapeters@hotmail.com
type: localized (Morphea/linear)
Date: 10/24/00
Time: 10:35 AM
My daughter, Rachell age 10, has linear scleroderma (en coup de sabre) on her forehead. We first noticed a red rash on her forehead at age 11 months. She was misdiagnosed for a year before we insisted on a biopsy. Christmas eve we were told she had scleroderma and handed a brochure on systemic scleroderma. The doctor was not real familiar with SD so after much research on my part I found her a specialist is Seattle, WA and we put her on methotrexate and continued it for four years. At age eight, a new patch formed on the other side of her head, we immediately put her back on methotrexate and prednisone. She is now off of prednisone and is slowing being taken off methotrexate she would like to find another child(boy or girl) her age with en coup de sabre to correspond with. Please smoeone with a child around age 10 with SD (en coup de sabre) email us. We would love to talk to someone. Thanks Alice Peters
address: Bunnyluv58@aol.com
type: localized (Morphea/linear)
Date: 09/25/00
Time: 01:11 AM
Hi everyone, My brother-in-law was just diagnosed in April of 1999....His main problem is his skin....REAL red & on fire & ITCH terribly....He's on his way to Philadelphia for a study....He also just had a seizure & was in emergency room at the time....Dr says he had heart, lung, & kidney failure but now home....He's very fatigued....It's a miracl he is home....Has anyone else had seizures due to this terrible disease?
address: sileziaj@absa.co.za
type: systemic (diffuse or CREST)
Date: 09/20/00
Time: 02:02 AM
I have been diagnosed with CREST early this year. I am from South Africa and no one has ever heard of it before. It was really difficult to get a rheumatologist to treat me, but I found one very near my home. She put me on minocycline and it seems to be working wonderfully, except on the teeth. But with care the damage is minimal. My dentist is wonderful in keeping my teeth pearly white.
address: drora36@aol.com
type: systemic (diffuse or CREST)
Date: 09/17/00
Time: 09:54 PM
I am a 45 year old woman who was diagnosed with diffuse scleroderma on march 2, 1999. I thought my life was over. I went into a quick deppression and just wanted to die. But I soon realized that if i don't snap out of it as quick as I fell into it I would die for sure. I started researching this desiese which i had never heard of before. I was lucky enough to find a doctor in Boston who believes in antibiotic therapy. I flew over there right away. I have been on this therapy now for 5 months and feel so much better. If anyone would like to talk to me they can e mail me. I would love to talk to anyone. I did not go into great detail of my story right now because it is basically like eveyone else. But I have learned that it is not the end of the world. there are ways to fight this. I have so many tips.
address: sp5571@aol.com
type: localized (Morphea/linear)
Date: 09/17/00
Time: 09:43 PM
Hi, I am 29 and have linear morphia on my forehead and half-way back on the top of my head. It started as a bruise-like area on my forehead, I was seventeen. Everyone said to me," Shari, you have dirt on your forehead." Well, it wasn't dirt.
I went to five doctors before one of them sent me to a dermatologist. After many tests, MRI's, and a trip to Ann Arbor, she diagnosed me.(Coup de Sabre)My forehead looks like a sword came down on it. For about three years I had collagen injections and took plaquenil. I had no changes. The disease never progressed and never got better. I decided to quit treatment and see what happened.
This year(8 years later)I decided to seek treatment with a plastic surgeon to see if the 1/2" by 4" scar could be removed from my scalp. It looks like I have a permanent part. The scaring also reaches down to the bridge of my nose, and spreads to a pie shape on my forehead.
I just recently noticed a scaly circular patch surrounded by a halo on my arm. In the right light, it spreads about two inches down my arm. It looks like a vacination scare. I beleive this is a reoccurance of the disease. I have an appointment with the doctor in Oct.
My question is, if I go ahead and seek the removal of my scaring with plastic surgery, will the scarring present itself again? The surgery is more involved than I ever imagined and expensive too. I really wanted to be quite sure of things before I commit.. Has anyone ever gone ahead with the removal surgery and what were the results?
Any comments or suggestions would be greatly appreciated. Thank you. Sincerely, Shari
address: cille@telepak.net
type: systemic (diffuse or CREST)
Date: 09/13/00
Time: 09:19 PM
I haven't been diagnosed with anything, but for eight years my arms, legs, and across my shoulders have suffered from a very painful burning, itchy feeling. Usually there is no sign of any eruptions or bumps, but lately places on my arms and legs will take on a honeycomb pattern to it. I have gone to every specialist you can imagine and no one seems to know what it could be. My shoulders have small white dots on them and the area between the shoulders look like acne scars. But! I have never had acne. My skin was also smooth and pretty and I wore a lot of backless dresses because of it. I just can't imagine what could be causeing this itching pain. Sometime ice packs help and sometime really hot baths help. Nothing topical really works either. I take antidepressants, anti-anxiety pills, neurontin, and accupril for my high blood pressure. The Doctors first treated it as an allergy, gave me prednisone and I went from 128 # to over 200#. A weight that I cannot seem to lose. I am 59 so I am certain that a lot of my discomfort stems from that. I have been told that I may have polycythemia vera and possible pheripal neuropathy. Can any one refer me to someone that can diagnosis just a painful burning in legs and arms and sometimes other areas of the body too. I would appreciate hearing from you. Cecile Shamis....email cile@telepak.net.
address: ladythor@pacbell.net
type: systemic (diffuse or CREST)
Date: 09/11/00
Time: 09:57 PM
I am 33 years old and have had Raynaud's since I was 15. In 1994 I was diagnosed with Hasimoto's thyroiditis and then in Feburary of 1999 I was diagnosed with Autoimmune Hepatitis. I have the CREST antibodies, but those are, so far, the only diseases showing up. Now, for about a year I have had this hoarseness in my voice so that friends think I have a cold all the time. I have had my throat scoped by a speech pathologist and she just says that it is swollen and "not normal". It is her belief that my problem is caused by reflux. However, I have NO symptoms of heartburn and never have. I have tried Pepcid, Zantac and am now on Prevacid. Nothing is helping. My question is could this be linked to all my other autoimmune disorders? Does anyone else out there have any symptoms of hoarseness, chronic couch, and a feeling of fullness it the throat. I would really just like some possible answers or hope or any suggestions anyone may have. Thank you
address: j_a_b_k@hotmail.com
type: localized (Morphea/linear)
Date: 08/30/00
Time: 08:36 AM
My name is Jessica. I was diagnosed with limited morphea when I was six. I'm 13 now. It started as a red rash on my right leg, and began to spread. It hardened, and for about four years I couldn't even ride a bike because it was so bad. It made the whole top of my leg hard and dry. Whenever I hit it on something hard, it would tear open and take a lot longer than usual to heal.
Since I was diagnosed, it has spread and is now on the top of my foot, the side of my hip, and is going to my abdomen. The parts that spread after the skin hardened are soft and brown, instead of hard and red or brown. About a year or so ago, my mom found something called tea tree cream and told me to use it on my leg. It has helped a lot. I can bend my leg farther, I don't limp anymore, I can ride a bike again, and the skin on my leg isn't dried out anymore. I now use tea tree oil, as well as the cream. She has bought me some green tea to drink, and we hope that will help too. We'll just have to wait and see what happens.
address: jondene_2000@hotmail.com
type: localized (Morphea/linear)
Date: 08/29/00
Time: 10:36 AM
We live in south australia in a small farming communitee. Since my youngest daughter of 4years has been diagnosed with linear, Ive learned that it is becoming more frequent in children and still very little is known of it.It started as what appeared like 3 finger like burns on her forearm it then joined forming a dry raised area @15cm long starting from her elbow and spreading both directions it is now from her spine at the back of her neck all the way down to her index finger now measuring @45cm in a time frame of 5 months. We are still awaiting treatmant as the doctor we are seeing says it is quite unusual to spread so fast. Weve been told that the only treatment for a child so young is to go to the adelaide childrens hospital and be prepared to stay for 3 days whilst hooked up to a drip recieving 3 different types of drugs that ruin the liver but maybe cure her. When my wife became pregnant we didnt even know, at the time we had arial cropspraying and myself and my oldest daughter and my wife all became sick,but my wifes illness continued after ours had gone.Amber(our daughter)suffered ecxma at 6-9mths of age and we put her on goats milk which cleared it up,although we cant stop her from missing out on chocolate and icecream.we hope to have some good news to report soon.
address: jacquikeane@hotmail.com
type: localized (Morphea/linear)
Date: 08/29/00
Time: 10:31 AM
hi my name is jacqui and my youngest daughter, Amber has been diagnosed with linear scleraderma(the doctor told us it was linear morphea) She has had it for @2 years and it has progressed from the tip of her index finger right up to her shoulder. This has now concerned the doctors and she is going to the Adelaide childrens hospital to see a professor and we have been told to be prepared to stay for at least 1 week as she may recieve treatment in the form of 3 different drugs pumped in to her via a drip...oh i thought...my heart sank. I can remember 2 of the 3 prednisone and mexetryxate (I think I have spelt them right!) the third I am unsure of. Does anybody out there know of this treatment or anything at all please e-mail me as I am unable to go with her to Adelaide as I work so her dad will be going, they will be going in a weeks time and we dont really know anything about this growth. all we have been told is that it can cause deforming of her arm and possibly her right side as it has grown rapidly thankyou for reading jacqui we live in south australia.
address: Melissagray871@cs.com
type: localized (Morphea/linear)
Date: 08/28/00
Time: 07:55 PM
My name is Melissa Gray. I am 22 years old and was diagnosed with Morphea at the age of 4. All of my life I thought I was the only person with this problem until tonight when I was looking on the net to find some information regarding the disease. What a relief to see I am not the only one. I can find so little information on Morphea and it has puzzled me my whole life as to why I had to have it. Please E-mail me for I would love to talk to someone who has this problem as well. I can hardly believe all of the stories I am reading regarding something I thought I was so alone with and that nobody could understand. Thank You! Melissa
address: Hmaker1201@aol.com
type: localized (Morphea/linear)
Date: 08/21/00
Time: 07:03 PM
Entire right side. I feel my scleroderma was caused from having untreated, undiagnosed polio at about age 11. Blood was sent to a lab in Calif.(only one that can determine if we old folks had polio) Watch out for more serious conditions from the Polio vaccines as my grandson (14) just got oral dose. Developed scarring on his back,2 places. Nurse is trying to say it is lupus. It is ALL a MEDICAL guess for we Scleroderma folks. Jusst leave the condition alone &live to fullest. Thanks---- Beulah West,Fla.
address: LynnandSpike@aol.com
type: systemic (diffuse or CREST)
Date: 08/18/00
Time: 08:59 PM
I was diagnosed with Scleroderma about 10 months as the reynauds was getting worse and I had many ulcers on my fingertips. Other symptoms were present. At this time I am trying monocycline two times a day. I'm starting to notice discoloration on my teeth as well as extra sensativity. I'm interested in locating anyone else trying this drug out and anyone who may have some information about how this disease effects your teeth. Thanks.
address: thedove@ida.net
type: systemic (diffuse or CREST)
Date: 08/16/00
Time: 09:03 PM
Today I received a call from a wonderful lady in Salinas CA with SD. She said she has been in severe pain for a long time and while taking her son in to therapy for a broken arm, the therapist asked if he could try what he was using on her son on her.After about a half hour of treatment she could tell a remarkable difference in the pain, so the DR. gave her a prescription for one of our devices. NO THIS IS NOT A COMMERCIAL. This lady received much needed relief of pain, not a cure, related to a condition I heard of for the first time today. Ours is a business based on helping others. For what it is worth, the web site is www.dovealliance.com - You can call the toll free number and just talk or use my e-mail.I don't have any new information but I care. Larry Ratliff Pocatello ID.
address: U2H@aol.com
type: systemic (diffuse or CREST)
Date: 07/11/00
Time: 04:54 PM
Hi, I am posting this message more as a question than as a statement. So if anyone can help, it would be much appreciated. I was just doing some independednt research on SD for my own interest, when I realized that many of these symptoms are what my mother has lately been experiencing. For about a year now, whenever it gets chilly, her fingers (and only parts of her fingers) turn an extreme white and then blue, which seems to fit the description of Raynaud's Phenomenon. In addition, she has terrible heartburn which has started to become more painful within the last month or so. Now from reading about the condition SD, I am worried that she might have it and that it may be worsening. Does anyone who has the disease or has extensive knowledge of the disease know if this could actually be SD?
address: frills-n-britches@home.com
type: systemic (diffuse or CREST)
Date: 07/11/00
Time: 01:44 AM
I am from Canada- Red Deer to be exact. I have slceroderma, FM, 1/4 of my left kidney, NO right kidney, raynauds syndrom, and now suspect glaucoma in my left eye.
address: cattm@mindspring.com
type: localized (Morphea/linear)
Date: 07/05/00
Time: 04:41 PM
My 13year-old daughter was diagnosed with SD in 1995. I beleive we were told it was Morphea, so much information, to much concern to take it all in. I would like to talk with others who have dealt with this themselves or with a child. She has been 'lucky' by most standards. It has only affected her right leg, but seems to be moving onto her foot and her hip. She refuses to wear shorts anymore, any suggestions for keeping up spirits? Catt(the mommy)
address: momagump@AOL.COM
type: systemic (diffuse or CREST)
Date: 07/05/00
Time: 12:33 PM
I HAVE A CO WORK WITH SCLERODERMA
address: Kathy6574@aol.com
type: localized (Morphea/linear)
Date: 07/01/00
Time: 12:06 AM
Hi, my name is Kathy and i'm diagnosed with Morphea. It started out with red spots on my left thigh and after 6 months, the spots spread below my knee After a year, I finally went to see a dermatologist. He took a biopsy and explained that is was a rash. I wasn't satisfied with his answer so I turned to the internet. I'm glad I did because I found others like me and i'm not alone. The dermatologist prescribed me cream and I used it for a couple months. The spots are still there but it's not spreading and it doesn't hurt at all. I exercise, like to read and listen to music. I have the love and support of my family which keeps me going everyday. Thanks for reading my story. If you have questions or comments, feel free to contact me. :)
address: daytonaf@webtv.net
type: systemic (diffuse or CREST)
Date: 06/30/00
Time: 06:08 PM
I have had severe diffuse scleroderma for over 10 years(since I was 22). The worst part of it has been the deforming of my hands. I had two operations on the right hand which improved practically nothing. Before I even consider doing something to my left hand, need to know if it will be different. If anyone has a successful hand operation story,PLEASE let me know.
address: CarLovDav
type: systemic (diffuse or CREST)
Date: 06/26/00
Time: 03:59 PM
My Husband and dearest friend died of Scleroderma last year. I still cannot come to terms with the effect this disease had on his body. He was a deeply religious person and never complained about his disease and the pain he was in. I know God had a hand in this and even though I am hurting so much, somehow, I think something good will come out of this.
address: CarLovDav
type: systemic (diffuse or CREST)
Date: 06/26/00
Time: 03:48 PM
address: CarLovDav
type: systemic (diffuse or CREST)
Date: 06/26/00
Time: 03:46 PM
address: ladee_charmander@yahoo.com
type: localized (Morphea/linear)
Date: 06/23/00
Time: 11:42 AM
Well pretty much like the rest of you guys out there.... had a tiny little rash, went to the doc... didn't go away; went to another doc.... didn't go away; went to another doc again..... didn't go away; went to another doc again and she appeared to get excited then said do you mind if I let my colleagues take a look at this. I said I don't care as long as you can tell me what it is and how to get rid of it. She comes back with her colleagues and they oohh and aahh a few seconds as she says I recognized it right away..... before telling me it's morphea it's very rare and there's nothing I can do to get rid of it. If they had caught it initially I could have gotten a steroid injection to keep it from spreading so much.... but of course such was NOT the case. I have it all over the left side of my abdominal area. I don't go to the dermatologist any more and that's too bad because I also have a bad case of acne which at age 35 is no fun at all. Looking on the bright side I can still wear a one piece when swimming; I never had a bikinni body anyway.
address: belliott@ruraltek.com
type: localized (Morphea/linear)
Date: 06/23/00
Time: 12:48 AM
I am a 22 yr. old mother. Just diagnosed with Morphea. I am having small side effects. And I am worried about what else may happen. I hope the rheumatologist can tell me more.
address: joanahrens@netscape.net
type: systemic (diffuse or CREST)
Date: 06/17/00
Time: 12:08 AM
I have a friend with systemic scleroderma. Her new doctor is using mga-vit C therapy & wants to use chelation therapy. Has anyone had any experieance with these therapies? If so, how successful ahve they been?
address: cstocum@ticopa.quik.com
type: systemic (diffuse or CREST)
Date: 06/14/00
Time: 09:16 PM
I was told by my family doctor that it seems that I have scleroderma. I have read on the internet many stories from people with this disease, my symptons are not as described by most. My hands and feet swell and ache, and are very stiff. mostly I have severe muscle pain. Blood test have given the doctor some clues. I am confused by his diagnoses. Has anyone had these symptons The problem started about 8 months ago. possibly I should look for medical advice through a specialist thanks for the chance to vent. C. Stocum in Pa.
address: elainemath@Aol.com
type: systemic (diffuse or CREST)
Date: 06/11/00
Time: 11:24 PM
Is anyone on Flolan? Did you travel by car on vacation? How did you keep your meds at proper temp.?
address: bradsmth@yahoo.com
type: systemic (diffuse or
CREST)
Date: 05/19/00
Time: 03:35 PM
Does anyone have any experience with Relaxin? My understanding is that a clinical trial is underway. Anyone involved in the trial? I am curious how this new drug is working and if there are any side effects. Thank you! bradsmth@yahoo.com
address: NANAJOC@AOL.COM
type: systemic (diffuse or
CREST)
Date: 05/02/00
Time: 07:19 PM
hi my name is jo i have CREST I WOULD LIKE TO HEAR FROM SOMEONE IN OKLAHOMA WHO ALSO HAS CREST I AM THE ONLY ONE I KNOW WHO HAS IT.
address: ifortin@amadeuslink.com
type: systemic (diffuse or
CREST)
Date: 04/27/00
Time: 08:00 PM
My name is Ivan and I just found out that my friend of 30 years has scleroderma. I found this web-site yesterday and even though I don't fully understand what it is, I printed many of the stories and information available here to give to my friend, Barbara, who will be visiting me this weekend (April 29, 2000). We lost touch with each other for many years (I got married, then divorced, she was in the service and then moved out of state) but she called me at home recently when I moved from NJ to Miami, FL (I had sent a change of address to her mother). Turns out, Barbara lives in south Florida too, about 15 miles from me. She doesn't have a big financial surplus and I don't think she has a computer, so I'm hoping that this information will be helpful to her. I told her that we'd visit this website together, over the weekend when she comes to visit. Thanks to Kate and Amie for this web-site. I was so grateful to find it. I'll let you know what happens this weekend.
address: jsquires@bigpond.net.au
type: systemic (diffuse or
CREST)
Date: 04/24/00
Time: 05:43 AM
Dear Friends
I am from Sydney, Australia and some of my doctors suspect that I may be developing scleroderma. One of the problems I have at present is bronchectasis in the lungs. According to my rheumatology text book, this can be an early sign of scleroderma. Has anyone else out there experienced this sympton? I would love to hear your experience and what happened next.
Regards to all, Elizabeth
address: marymoo1@yahoo.com
type: localized
(Morphea/linear)
Date: 04/20/00
Time: 07:08 PM
Hi My name is Mary and i'm 24 yrs old and I live in Sydney Australia. In the last few weeks i have been told by my doctor that i have Morphea. Like most of the other people i've read about in this site i jumped right onto the internet to find out what it was. I have had nothing in the past 23 years to suggest Morphea or the like. It wasn't until about 4 months ago that my sister noticed a mark on my back. Before this it hadn't hurt been itchy or anything.
The doctor decided just yesterday to do a blood test to determine if it is Local or generalised. After i started reading some of the stories on this site i got quite disturbed and thought "oh no what do i have". but i have a long way to go to find out alot more about it. I don't think mine is LINEAR as it hasn't spread anywhere else nore have i had any other problems, except maybe some itching on my lower back.
if anyone wants to talk to me or let me know of any treatments please feel free to e-mail me.
Many thanks
Mary
address: leueen.w@sympatico.ca
type: systemic (diffuse or
CREST)
Date: 03/31/00
Time: 09:59 PM
I have difuse scleroderma. I have recently been diagnosed with rectal cancer. The oncologists are telling me that they are hesitant to do radiation treatment becasue of bad side effects in people with scleroderma. Has anyone else had any experience with this or know of anyone who has? any info at all would be much appreciated. Thanks! Leueen
address: farrahns@hotmail.com
type: systemic (diffuse or
CREST)
Date: 03/31/00
Time: 06:49 AM
Hi! My name is Farrah and I was diagnosed with systemic sclerosis (diffuse) a little over a year ago. One of my doctors recently prescribed a new medicine called Enbrel (etanercept). I'd like to know if anyone is currently on this medication or has heard of it. Thanks! -Farrah
farrahns@hotmail.com
address: amn1967@yahoo.com
type: systemic (diffuse or
CREST)
Date: 03/29/00
Time: 06:27 PM
My name is Ann and I'm 33 years old. At age 24 Im was dignoise with diffused sclerderma. It was a very scary thing. It has limit me to do a lot of things, but I push myself and try harder to do the things. Even though I tend to get upset. I also get upset when people look at me like I'm a person from mars. I have a good heart and even when they make fun of me, I treat them with respect. It has affected alot of things, like my hands,trouble swallowing,going to the bathroom,my feet and my teeth. I have the eye and nose dryness but with the faith of God he will give me strengh. Lately I have been feeling a little sick with headacks wich affect my ears. Well soon I'll make an appointment with the doctor to see what is going on I hope nothin serious. I really don't know much people with my sickness. I hope threw these website I can learn. Love all of you and rember the Lord loves you and continue to fight.
address: brucejulieben@yahoo.com
type: systemic (diffuse or
CREST)
Date: 03/29/00
Time: 06:25 PM
My disease began with swollen hands and from there progressed quite rapidly. In May 1995, two weeks before my wedding, I was sent to John's Hopkins for a second opinion. Everything went downhill from there. I reached the point of not being able to move around much (without a great deal of pain). At the end of November 95, I found out I was pregnant! I slowly began feeling better. I had one flare-up 1 month after my son was born.(He was born on my birthday!!) Since that time 3 1/2 years, I have been doing wonderfully. My doctor imformed me that I could go many, many years without another flare-up. I'm keeping my fingers crossed(and a few prayers certainly don't hurt either).I would love to here from anyone that has a similar story, or anyone who would like to talk. - Julie
address: clarks@iocc.com
type: localized
(Morphea/linear)
Date: 03/29/00
Time: 06:24 PM
I am 31 and was diagnosed with Localized Morphea about 8 years ago, and I have red, blotchy scars covering my inner thighs and calves. I have never had any pain or discomfort from this, but people notice it and assume I've had some kind of trauma. The doctor who diagnosed me said that he had only seen one other case in his career, but since I found this site, I don't feel quite so alone. If anyone knows of a support group in the central or southwest Arkansas area, please e-mail me. Thanks.