| 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 |
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clarks@iocc.com
localized (Morphea/linear)
03/22/00
10:02 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.kgoldenberger@msn.com
CREST/Limited
3/15/00
Hi,
My name is Karen and I was diagnosed with raynauds in 1972, but then found out that it was also connected to CREST in the early 80's. Again, I went in for testing and was told that my results were positive for Scleroderma. I struggle with keeping my hands from turning blue, but wear gloves quite often and try to stay warm. I was able to find some great safe, natural products to help with the symptoms of the Scleroderma; which has really been a blessing. I find that my skin gets blotchy and my pressure points have turned brown. Is there anyone else that has experienced this? My doctors have encouraged me to eat low fat meals, exercise and invest in good preventive health care products. My prayer is that someday a cure will be found. If you are in need of finding some help with your treatment plan, please feel free to email me directly.
Best regards.......Karen
cping@bossig.com
CREST/diffuse (systemic)
3/15/00
My name is Christina Ping and I have both Scleroderma and Lupus. I was diagnosed in 1966 at the age of 14. You name it it has happend to me. I lost the use of my esophagus that same year. In 1987 I had to have a central line IV to feed me. I ate nothing by mouth. the IV went directly to my blood stream and that was my only nutrition. In 1992 I had a miracle. I was able to digest again. I belive it was the use of methotrexate It has a side affect.... it softens the skin. It is my theory that the intstines were softened and began to work again. They had told me that would never, could never happen. I also belive God answers prayer. and that was a great influence on my health. There was a down side to this drug therapy. I became alergic to it and it shut donw my lungs. In 1996 they were so bad they told my family I was dying. They put lme into a drug induced coma the doctors wanted all the oxygen I did get to go to my organs first. I was on a respirator and all life functions were taken over by
machine and IVs. They gave me 4 hours to 4 days to live. God brought me through. They had given me every treatment they could think of. including cytoxin, and what they call gorilla warfare of antibiotics. I lost 35 pounds, all my hair. and the use of all my muscles. God came thorugh again and I slowly improved. It took three months for me to exercise my muscles back to any usefulness. It was always God who got me through. In may of 1999 I had heart problems and had 4 stents put in during angioplasty. I am now on oxygen 24/7 and get winded walking from one end of my house to the other. Life is still worth living even now. I woldlove to correspond with anyone who has Scleroderma. I am very new to the web but am finding it great. My e-mail address is cping@bossig.comChristina
Geovannybrito@gateway.com
Dear ladies and gentleman;
I'm writing in behalf of my cousin, which I love very much, she was diagnosed with Scleroderma. Presently, we are still in shock, we are trying to learn more about this disease that seems that is destroying many lifes.
My cousin was diagnosted on October of 1998 as having Scleroderma, as you can imaging how she feels, she is only 21 years old, and she just graduated from college.
She has seen a team of doctors and she has found one, at Virginia Mason Research Center in Seattle, Washington, they have been very successful in performing on patients with Scleroderma an experimental treatment called Stem Cell Transplant. Although the Virginia Mason Research Center believes that my cousin is an excellent candidate for this treatment, her family and insurance doesn't cover the expense of the procedure which costs approximately $250,000. Without the procedure, my cousin has a maxium life expenctancy of five years and will become paralyzed during this short period of time.
My cousin desperately wants to do this Stem Cell Transplant, and we are trying to help her. We have established a private foundation to raise the necessary funds for my cousin's Stem Cell Transplant, but also to help other victims of this devastating illnes. We only hope that we can touch some people or organizations to help my cousin and other victims.
My cousin needs everbodys help, I only ask if you could possible pass along this information to person(s) or business that are willing to help.
The name of the foundation is:
Carmen Rijos Private Foundation
335 Locust Avenue
Port Chester, NY
10573
PS: Your donation is tax deductible to the full extent of the law and is greatly appreciated.
darine@dstream.net
localized
(morphea/linear)
2/8/00
12:12:40 AM
I'm Darin; Age 30 My wife, Janice, is 29 and we have been battling her diagnosed morphea for over 4 years. It started while I was still in the military and they prescribed bleaching creams that really bleached the skin. The cream took out all color (my wife is of pacific island origin with naturally tan colored skin) an left white blotches where it had been aplied. We then seen a dermitologist that prescibed a steroid cream and sent her to a rheumatoidologist who prescribed an anti-cancer drug. After this didn't work we seen another rheumatoidologist who has taken great interest in the problem. Unfortunately she informed us that the previous physicians should have never given her the treatment they did. It only made the condition worse. Leaving large areas of scare tissue on the surface of her skin. She (the new rheumatoidologist)is not real sure how to treat it, but we are all workin together. My wife will not wear nothing but long sleeve shirts and trousers because of this condition. She also complains of extreme sensitivity and tenderness in the affected areas. If anyone can help us please send info to darine@dstream.net.
thank you Darin & Janice Edwards
bahboo@techline.com
localized
(mophea/linear)
2/7/00
2:02:35 PM
Hello! My name is Bobbie. I was diagnosed with Localized (linear/morphea) three years ago at the age of 63.It covers about 65% of my body. My face is affected in the lip area mostly. I have had much success with PUVA treatments. There isn't much that can be done about my lips but,I am getting to the age where I had to expect wrinkles anyway! I would be happy to Email anyone who is interested in learning more about PUVA and to compare other symtoms and treatments. Thanks for listening. Bobbie.
lewrb@mindspring.com.
diffuse or
limited
2/3/00
10:22:31 PM
Hi My Name is Barbara
Reading some of the excuse me coments, let me know I am in the same fix as you. Having Crest Scleroderma and finally being diagnosised correctly has answered my many questions. As I read some of the stories listed, I am scared even more. Doctors have just said I am a complicated case and gone on but I contiue to suffer. Trying to keep my mind off my pain and occupied is not always easy, but I try.
bpyoung-cm@wmsburgpa.com
localized
(mophea/linear)
2/3/00
7:22:34 PM
Hello,I am writing to see if there's anyone who has a son with scleroderma. I have a soon to be 10 year old who has had scleroderma for 5 years now. His right leg is affected from the top of his hip to the tips of his toes.The scleroderma has all the ligaments and tendens in his knee and ankle.This makes it hard for him to bend it. He also has it on the right side of his butt. Then on top of that he has morphea on his chest only on the right side it's starting to go around to the side of his back.He is seeing one of the best doctors in the country. He goes to Dr. Medsger in Pittsburg. He has gone threw so many different treatments and blood work for the last 5 years. I would love to talk to someone who is going threw the same thing.This is one of the hardest things I have ever gone threw emotionally. When we found out he had scleroderma Ihad no idea what it was and neither did my husband. We went to the local hospital and used their research library to see what we could find. Well we found eveything we thoughI hope this story reaches out to a few people, it was very hard to write this thinking back to what we have gone threw so far and knowing there is more to come. God bless anyone who walks these footsteps with their child not knowing where they will lead. If anyone would like to get in touch with me my address is bpyoung-cm@wmsburgpa.com
mjmcfarland@juno.com
diffuse or limited
8/17/99
11:13:41 AM
Hi everyone, This is the first time I've done anything like this, in fact I'm new to the web so I am experimenting with it all still. My name is Marla and I'm a 38 year old female, married with two little boys. I am in the early stages of disease and have not been diagnosed yet. My Dr. thinks I have either Lupus or Scleroderma. I go back and forth....right now I think it's scleroderma. Last Sept. 17 I started having pulmonary symptoms. To make a VERY long story short I was diagnosed as having pneumonia by fam doc then sent to Pulmonologist when I didn't improve w/meds. On to Cardiologist when all testing was as normal as could be. Back to fam. doc when all cardio. testing was normal. He discovered hypothyroidism and was hoping that was the problem of my SOB but didn't improve. He sent me to one of the best Internists in the area and right away due to my symptoms (SOB on exertion, swollen fingers in a.m. since Feb., hypothyroidism) he suspected Lupus or Scleroderma. My ANA was positive and subsequent bloodwork (ADSDNA, SCLERA, ASMITH, etc) was negative. In June I started developing other symptoms such as joint pain (fingers mainly), swollen area underside of right forearm, occasional swollen writst, an area under my left ring finger that is puffy and hurts occasionally, burning skin, white patches and red patches w/little white bumps on them in my mouth. At this point my symptoms are vague and I can't get a diagnosis yet. He said for now we will treat it as Fibromyalgia and watch symptoms and bloodwork to see new changes. I'm taking RX strength Motrin and Pamelor. I think my legs are changing....how does one know when the skin is thickening? For a couple of months my thighs feel "heavy." It's hard to explain how they feel but they feel different. And when I squat down they feel tight. This scares me.... As for now I'll continue seeing the Internist. I think I'll play it by ear. There are only a few Rheumy's in the area I live and this Dr. says he has treated many Lupus and Scleroderma patients. I like his attitude...he says he is there for me and if I'm not comfortable in his care to just say so and he can refer me on. He says he usually doesn't refer people on unless he feels he isn't doing anything for them or the patient wants to be referred. I think at this point I will continue in his care because I like him and investigate further options. I think I will start going to either Lupus or Scleroderma support groups and get others' opinions about area docs and I also live only about an hour from Ohio State University which has a Scleroderma clinic. So, anyway...I'd like to hear from folks. Please feel free to Email me. I'm trying to learn everything I can and am finding that the net has the greatest source of imformation. I also feel alone often and it feels good to listen/talk to those who understand. Thanks!
My name is Quentin......I was diagnosed over a year ago with morphea scleraderma.....i have significant scaring on my right leg.....hard raised areas and dark areas along with significant piting. I never really had much pain or discomfort until the last few weeks...and i have no idea if these symptoms have anything at all to do with the scleraderma.....but as of 3 weeks ago.....ive become very weak.....tired...the back of my legs are absolutely killing me.....i cant walk 10 feet without becoming short of breath.....i keep a dull headache.....and my vision has become blurred. i contacted my doctor yesterday and went in for blood work.and this morning returned for chest xrays. does anyone else have these symptoms? i suppose what im asking is...does anyone think my scleraderma is getting worse?.....i also noticed the last few days stomach problems. my doctor said it will be next week before i get any results from my test. peace to all Quentin
my name is alysson and I'm 25 years old and recently diagnosed with morphea. It's on my back and find myself fortunate that it hasn't interferred with my muscles or joints. I'm curious has anyone else who has morphea been bitten by a tick? I've had rocky mtn. tick fever in the past. If it is at all related to borrelia burgdorferi, is it possibly related to ticks? Thanks for your time and bless you all.
Hi My name is Judy and was diagnosed with Crest/limited Scleroderma in feb 99, tough time getting right dianosis . I have lung involvement , after a lung bioopys the said i had idiopathic pulmunary fibroisis. i have had raynauds syndrome fro about 10 years i am currently on 60mg of predizone and 150 mg a day of cytoxan. they want me to stay on the cytoxan for a year. so far no improvement in my breathing capacity. but from what i read it should improve. would like to talk to people with the same symtoms as me. my skin is normal except for one finger showing a little tightness. my fingertips and my toes are clubbed thats how i found out about my lungs being involved. i live in Pittsburgh, and was diagnosed by Dr Medsger. after reading the sceroderma newsletter i feel confident i am taking the latest medicine. but i don't think the doctors are sure if my lungs are going to get better. they want me to be evaluated for a lung transplant if and when i need it. i am 43 years old. anyone out there like me?
I was diagnosed with morphea in 1997. It started on my back and was a small, hard, dark area. I then started to see "Bruise-like" areas on my legs. I have several areas now covering my legs, arms, face, neck and trunk where my pigment has turned dark. One area under my arm is a white, raised area that feels like scar tissue. I have not had any treatment because I am currently pregnant. It has not spread in a while, but I would like to see if there is anyone who has gotten the dark areas to either lighten or disappear. I would love feedback from anyone who has been treated for this condition. I would also love for someone to respond who has gone through pregnancy with this condition and how it affected them and the baby. Thank you for your responses. Amy amymhenderson@yahoo.com
My name is Stephany Ray and I was diagnosed with Scleroderma and Lupus 13 months ago after being ill for 4 years. In January of this year I had the opportunity to attend a lecture conducted by a scientist that has been working on water research in Japan for the last 15+ years (Japan is in the forefront of Water research in the world). He has created and patented a Stabilized Cluster Water which is identical in structure to the healing water found at LOURDE'S, France. If you're interested, please write. My kindest regards, Stephany Ray Yelm, Washington ray2077@aol.com
Hi, my name is Star. My little sister has scleroderma. She is only 16 years old. She is beautiful and full of life. I love her to death. I don't know which type of scleroderma she has, but I do know that it's the kind that will kill you within 10 years! My sister will live though. She saw a doctor named Dr. Trentham in Boston, Massachusetts. He put her on a mild medication that people use daily for acne problems. I can already see that she is getting better. I'm so excited for her. I tell everyone this and knowone takes me seriously. Just think, if you had the chance to just try one more thing to live and it did work, you would be so lucky. So don't blow me off so easily. Write me or look for Dr. Trentham. He is wonderful and can help you too! Thanks for listening and if I find out anything else I will let you know!
Hi, no diagnosis as yet -- in the testing stages. Just wanted to know if there was anyone who craved fat badly! This seems to one of the things that has been enhanced lately. Have gotten much worse pain in the fingers, too, but that I understand. The desire for fat "boggles my mind." Thanks! Mary Ellen
My name is Nancy. I'm 57, retired from 31 yrs. teaching middle school. I'm married, have 4 kids and 4 grandkids. I have CREST. I've lost one finger, have esophagus problems, (I ditate my own now) and recently I've had major foot problems, swelling and infection, finally operation to open, drain, and clean out. I've been on crutches for 2 weeks and hope to use my heel to hop around on soon. I've never had foot infection before, has anyone else? I have finger ulcers all the time. The good news is that I now receive disability. I live in northern Indiana. Would enjoy talking to others in similar boat
I am a 43yr old male living in East Texas. I was diagnosed with Scleroderma over 20 years ago while living in Illinois. The Dr.'s did not seem to know much about it and did not tell me what type I had. I have had no treatment and not really talked about SD for all these years. I never met anyone with my symptoms and thought I was all alone. I met a one Doctor years ago who said I had a Coup de Sabre on my forehead. I thought it was just a figure of speach not knowing other people had it til I saw it on the web site. To not make it so noticable I use a eyebrow pencil to fill in the hair loss and I started parting my hair on the other side. I have made up a million stories of how I got this dent in head. I do have the patchy skin on most of my left side arm , leg and torso which has seemed to increase through the years. I do have muscle contractions (spasms) in those areas when I seem to over exert myself or eat junk food. I am married 17 years, have a 10 year old very healthy son. It has been a wonderful experience finding this web site. I have always felt like kind of a oddball. Thank you for giving me an outlet.
My name is Kim and I am 27 years old. It all started when I was 21 and almost done with nursing school. I started having trouble with my left ear lobe ( I thought it was from wearing cheap earrings) and my left hand, had a white patch on it..I let it go for a while. finally went to see a doctor who diagnosed me with having scleroderma (one doctor has told me linear, the othe morphia) I now have this disease mostly on the left side of my body..My ear (has shrunk and gotten hard) My neck, My chest, and my left hand, I only have use of 2 of my fingers on my hand. the others have gotten hard, shrunk and are not fixated in a bent position. I also have a few small patches on my right leg. I TRULY believe I have been poisined by Diet Soda...(with nutrasweet and aspertame) I am looking for other people with this disease who feel their disease might also have been caused by this.... bMartha51@aol.com
I am 43 years old and have Crest Syndrome. I have had it for 14 years. I have problems with my Esphagus and the skin on my hands, feet, and some of my face is hardening. I find that trying to get through everyday is a challenge due to the horrible pain that I face everyday. I currently take Ultram for the pain. And as much as you try to help epople to understand what it is you are going through, they don't seem to be able to understand since you look so well on the outside, how could you be so ill on the inside. I would just like to be able to talk to someone through e-mail who is going through the same thing I am.. Who knows, maybe we can be uplifting to one another as we journey through life with this horrible disease called Scleroderma. My e-mail is bellehouse23@yahoo.com. Robin
hi, My name is ed and i'm 26. I was first diagnosed with morphea in the 7th grade. 2 white patches formed almost instantly on my back. I first went to a local dermatologist where a biopsy was taken. after we received the results i was refered to the skin and cancer hospital at temple university in phillie. i was seen by Dr. Urbach, a renowned dermatologist. he told me that it was harmless and to stay out of the sun. the morphea spread down my left arm in a 2 inch strip all the way to the end of my thumb. my left shoulder has considerable muscle loss. it is virtually skin and bone. a few years later i went to the mayo clinic in jacksonville. they pretty much told me the same thing. although they did mention of a treatment that was used to treat malairia. there was 1 side effect though, it caused blindness. that was 10 years ago. anyway, hang in there people!!!!!!
I was diagnosed with Crest just recently.I have read tons of information on it lately. I have Barrett's Disease,Raynauds,and all of the symptoms of Crest.I must say I am very scared.One minute I feel like I should try to do all of the things that I've always wanted too.The next minute I feel like I'm blowing this out of proportion(that I'm being a big baby).Right now the most difficult thing is fatigue.I feel I am wasting so much of the day sleeping or just sitting around.Also why does everyone thalk about weight loss I've gained 50 or 60 lbs.(lost count)?I do want to thank everyone it really helps to know that I'm not out here by myself,and to realize that it some ways I am very fortunate.Donna
my name is lauren d. i am trying to reach those that have scleroderma and may suffer from the some of the same symptoms that i have. i am 45 i have scleroderma in patches my thigh, back, esophogus, chest, major joint pain constantly that it is almost normal to have it. i am also diabetic insulin dependent, i also have crohn's , hypertension and have had 3 congestive heart failures in 1998. this is the short of it, so if anyone would like to e-mail me on Yahoo or aol, L6463@ hope to hear fom someone soon.
Hi my name is Kris and I have morphea scleroderma. I am 32 years old and pregnant for the first time. I was told I have low amniotic fluid. I am in my fifth month of pregnancy. Has anyone had any experience with this? Could this low fluid have anything to do with my scleroderma? My doctor is unsure. I would appreciate any information.
Hello everyone, my name is Cris. I do not have Mophea/Linear, but my husbands best friend does. When he was told from the Dr. that he has Mophea they told him and his family that he would only live maybe four to five years. They told him that when he was 15 years old, he is now 29 i am glad to say. My question is what is the average life expectency of a person who has Mophea. I do not know much about Mophea so I was wondering if anyone could help fill me in.
Are there any other lesbians suffering from Scleroderma?
I'm 34 years old, happily partnered to my best friend (Mary, who incidently has MS), and was recently diagnosed (yesterday!) with PSS. I've spent most of today learning about this via the internet - very scary. But with the stated ratio of 4 women for every man who gets this disease, I figure I'm not the only "family" girl out there... and the company of my sisters always strengthens and empowers me.
I'd love to 'talk' with other lesbians facing this challange.
Monica at Pearlgrrrl@aol.com
Hello, my name is Karen, I'm 27 yrs old and have had Scleroderma for 6 yrs. I was diagnosed with diffuse in March 1994. My initial symptoms were, swollen hands, feet & legs. One month later, my hands started turning blue, and were very painful. I went to a few different doctors and no one knew what was wrong with me. After hundreds of tests the doctors finally told me I had Scleroderma. I started having very painful ulcers on my fingertips. My skin had gotten very tight I could barely walk. I was then referred to a hand surgeon that performed digital sympathectomies. This surgery had relieved about 85% of the pain. I had also developed osteomyelitis in the bones of my fingers and had to have several picc lines inserted into my arm so I could receive IV antibiotics. I am currently taking Cytoxan because I have lung involvment, that has helped me tremendously, Prevacid & Propulsid because my digestive system isn't really that great, and Prozac because this disease has caused my a great deal of depression. In November 1998, I went to see Dr. Charles Melone, a hand specialist, at Beth Israel Hospital in New York. January 1999, he performed surgery on my right hand, which involved fusion of my fingers to straighten them out. In May I will be having my left hand done. I now have more use of my right hand. I can tie my shoes, grasp things I couldn't grasp before, and it looks so much better. I used to be embarrassed to be around people because of the way that I looked. But now I know that it doesn't matter what you look like on the outside, it matters what's on the inside. These past 6 years have been very rough for me but I thank god everyday for my loving and caring familty who has supported me through all of the tough times.
Thanks for visiting the page. Please post here and make contact with others affected by scleroderma. Contact me directly by email if you have any questions or need any help. Amie\