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

 

Postits from 5/03 to 1/04 below.

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email: hfjsdtry34s11@msn.com
Type: Systemic (diffuse or limited)
Date: 01/19/04
Time: 10:43 AM -0500

Note

hello everyone it's Sam haven't written in a long time. Let's see I had found out that I have high blood pressure now and a thyroid problem and ulcerative colitis and Hiatial Hernia and my lungs are starting to harden. This is all from since i had surgery on my knee back in Feb. 2003. I couldn't go back to work everytimer i did i would have a flare up. I had filed for disability in September it's now Jan. 2004. I take alot of meds now days. Having alot of pain through out my body. I'm just really tired of all of this. I do have appointment on the 28th with a doctor for disability. not really looking forward to it. hopefully i will be able to get on disability. Well I'm going to go you all take care and keep warm. Sam


email: lirpashowers3@webtv.net
Type: Systemic (diffuse or limited)
Date: 01/17/04
Time: 07:21 AM -0500

Note

Hello, April here again. I had added a post on a site I made for us victims called: "LOSING FACE I HAVE SCLEROERMA" I had to rename the address. The correct addy is below. Thanks and hugs, April http://lirpashowers.250free.com/LosingFaceScleroderma.html


email: Melonyrose23@aol.com
Type: Systemic (diffuse or limited)
Date: 01/16/04
Time: 05:16 PM -0500

Note

I have scleroderma, IM 24 years old ,I've had it since I was 5 years old. IM starting to get sick, I have not taken my medicine and my joint are starting to ache really bad. I have been having breathing problems, like I have somethin stuck in my throat. I hate this thing on my leg, I always looked down on my self when I was kid, now I stopped looking down on myself. How do you people cope with this, anything that is effecting your life badly from Scleroderma. I feel it is changing now, so maybe someone older can tell me what is going on with them. Thankyou Melony Simpson -- California


email: bobbijones787@hotmail.com
Type: Localized (Morphea or linear)
Date: 01/15/04
Time: 08:26 AM -0500

Note

My name is Bobbi. I am almost 34 years old and I live in Nova Scotia, Canada. In October of 1999 I went to my family doctor due to some large patches of discoloration on my right hip and my right arm in the triceps area. He thought some type of skin fungus and suggested using an anti dandruff shampoo applied as a topical cream to the affected areas. After doing that some of the spots actually got sore and scaly. So I stopped and he sent me to a dermatologist in November of 1999. The dermatologist did a biopsy of the spot on my hip. The biopsy came back and he reported that the results indicated Morphea; however he was not sure he agreed as my symptoms did not match. He said it was no big deal and there wasn't a lot that could be done. He said the spots were permanent. He could prescribe some cream however it was very expensive and not likely to improve anything. So I went home and thought nothing more of it. In December 1999 a "mound" appeared on the back of my right hand. My fingers felt tight and swollen, the back of my hand was warm to touch, I could not fully extend my wrist up or down, I could not make a fist, and any force (like playing pool, tossing a ball) applied or exerted by my right hand caused terrible pain…enough to make me cry. The skin was tight and it could not be pinched. So, off to the doctor I went again. He thought tendonitis this time and sent me off for physiotherapy. After 6 weeks with no improvement my physiotherapist was reluctant to continue as she felt it may not be tendonitis and whatever it was, therapy may be making it worse. So it continued to worsen and confuse my family doctor. By March my fingers were in a cupped position all the time and I could not fully extend them and my hand and wrist ached constantly. My doctor prescribed Celebrex but nothing helped. In March 2000 I was a passenger in a car accident which affected my left side (neck, shoulder, upper left back). My focus was shifted from my hand to therapy for my new injuries. Now I had a new spot on my right shoulder, completely different from the others. It is a thick, white, raised spot. In April 2000 I began having pain in my lower legs, especially my right. My doctor was even more puzzled and concerned as my issues seemed to be completely right sided. I could no longer crouch to tie my shoes or get down on my knees and sit back on my heels to play with my children. He made a referral to see a doctor of internal medicine and a Rheumatologist. My appointment was in May to see the Internist and in September to see the Rheumatologist. The internist had no explanation for me either. He did blood tests and physical tests but could not diagnose my problem. I was to return to see him in June for a follow up. The last Saturday in May, I was sitting on the edge of the sidewalk watching a parade with my family. When it was time to go home and I stood up, my feet were so swollen I had to remove my shoes to walk, and my right, lower leg was swollen to twice its size, was tight and shiny. We went home and I went to bed and elevated my legs….back to the doctor on Monday. Puzzled once again, he sent me directly to the hospital for blood tests to rule out blood clots. Again, nothing showed up in my tests to indicate what was wrong. So I went home to live with yet another symptom with no cause. Now I had difficulty walking. When I would get up in the morning, I had stiff and painful ankles. As the day went on, it got better, but I still limped noticeably. If I sat for any period of time, the stiffness came back and if I stood my calves ached. I found it very difficult to come down flights of stairs as weight bearing on one leg was quite painful and impossible. I had to take one step at a time like a toddler. My hand was terribly affected as now my little finger was completely curled and I was unable to straighten it, the flexibility and range of motion for my wrist had ceased to exist, and there was constant nagging pain. By mid June I had my follow up with the internist who had no answers but promptly sent me for an ultrasound, as my right leg was still noticeably bigger that my left. The ultrasound again found nothing to indicate a source for my symptoms. The radiologist and technician joined the growing group of medical professional who were stumped by my symptoms and acted as though I was a mystery to modern medicine. So I anxiously waited for the time when I would see the rheumatologist. When the day came, I went to her office. She spent 15 minutes with me, told me it was Generalized Morphea, there was no known successful treatment, but it was highly unlikely that it would develop into the scleroderma, which could be fatal. "I am sorry, but there is nothing that can be done" she said. I was devastated. I called my dermatologist and expressed my frustration with him that he did not explain to me that all of these things could happen to me because of Morphea. I was angry and scared and had spent a year wondering if I was slowly dying. So now I didn't even have hope…no one knew how long it would last, how many parts of my body would be affected, or how much more pain I would have. This is what I knew: • I knew that it was unlikely that I would die as a direct result • Each spot had three cycles: 1. initial inflammation; 2. thickening\scarring (darkening or blanching of pigment); 3. softening and fading. • The scarring could cause atrophy if over joints, especially joints with very minimal connective tissue (like wrists, ankles, fingers) • Once the third cycle began, there could be some relief of the stiffness as the spot relaxes. • There is no way to know how many times this will happen in my lifetime and each spot has its own lifetime with no known or estimated time frame for each cycle. • It is described as an autoimmune disease where your immune system attacks connective tissue. So I began trying to accept it and live as best I could with it. Then in November of 2000, the Rheumatologist called me. She said she had been thinking about my case and asked if I would be interested in attending Grand Rounds in December 2000. I agreed immediately and some hope was restored. At Grand Rounds I was seen by approximately 30 doctors (dermatologists and rheumatologists). From that visit I was placed under the care of Dr. Klotz in the hospital dermatology clinic to begin PUVA (phototherapy) in January 2001. The PUVA is supposed to speed the cycles up so it goes into the third cycle more quickly, reducing the time it has to cause scarring. I went to the hospital on Monday, Wednesday, and Friday. I soaked in a tub of clear water with a syringe full of a clear medication in it for 20 minutes. Then I went into a tube like a tanning bed for incrementing intervals of time….I started at 7 seconds and finished in April 2001 at about 10 minutes. The whole process took about 30 minutes, not including the waiting in between rooms. Realistically it took an hour to an hour and 30 minutes each time. By April I could straighten my fingers and the flexibility and range of motion in my wrist had improved. I was no longer struggling to walk and the swelling was gone in my legs. Now, based on what I know, I am not willing to say it was the PUVA treatment that improved my symptoms, as it may have been the amount of time and the affected areas may have just run their course. All I know is that doing something was a whole lot better than not trying anything for me mentally. So that is my story. As of today December 30, 2003, I have dark spots on both my ankles, my right hip, my inner thighs, under my right breast from my side to the center of my chest, my buttocks, and my right triceps area. My hand has spots with no pigment and the skin on the back of my hand is like it is glued to the bone in my hand. The skin on my ankles is like that too. I have shiny skin that looks like it is bruised on my right forearm on the underside. The spot on my right shoulder has turned dark from the lack of pigment it had initially. The spot on my right triceps is thick and seems like there is a tight cord through the middle of it. There is a thick spot on my left calve about the size of tennis ball that is dark and blanched and very thick. I have days where my hand aches, and it still isn't back to normal. I am walking fine and only have aches in my ankles and legs from time to time. I get lots of sun when I can and that seems to help. I hope this story is helpful to someone else out there…..if you would like to contact me you may do so at bobbijones787@hotmail.com.


email: neighbod@nicholsal.com
Type: Systemic (diffuse or limited)
Date: 01/14/04
Time: 02:59 PM -0500

Note

Hi my name is Darcy N. I am 49 soon to be 50 and I was diagnosed about 3 years ago now. I have scleroderma, raynauds and tmj. The worst part for me at this time is that the tmj is very painful. I have a hard time eating things I like and from my chin up to my eyes if feel this tingling sensation constantly. My gums hurt and bleed. I can see the change in the shape of my face in these past couple of years. I guess there is a good side, I shouldn't get wrinkles from age because the skin on my face is tight all time. The next on my list is my hands, feet and joints. I am always uncomfortable, cold and achy in the joints. My hands sometimes swell to twice their nomal size and it's hard to grab onto things. I can't file at work anymore because of this. I have a hard time sitting for long periods or standing for short times. I lost 50 pounds at the beginning and now I seem to be putting them back on at a faster rate than I lost them. I have been through several tests, ekg, stress, electricardigram, cat scans, endoscopy, you name it. I am on Previcid for my esophagus problem. I also have a valve in my heart that they are now keeping an eye on because it is not functioning properly. I keep extra clothes, gloves, socks and so on with me at all times because of the cold. Work is hard on me because I am always tired no matter how much rest I get. I get very cold at work even though I work in a office and some days my fingers turn so blue I have to put gloves on. This makes it nearly impossible for me to do my job since most of it is writing and computer work. Because of the TMJ I also have some problems pronouncing words or comunitcating with other because of it. Some people think I'm drunk when this happens. Other days I can talk like I have no problems. The cold also makes my face hurt a lot more. I would like to stay working but I can't even keep my house up without my husbands help. I don't think I can legually go on disabity yet. Even short term through my insurance at work may not be doable. Some days I feel like giving up but my husband is a great guy and for him I keep on going. He has to do a lot of the chores that used to come easy for me. He is very understanding and helpful, and I feel like I am neglecting my duties, he also works long hard hours and when he gets home he is tired. I have a lot of support from family and friends but at times it's hard for me to explane to them just how bad I feel or why. All I can say is that I would not wish this desease on anyone, not even the devil himself. I will keep on going as long as my body will let me but I feel I am missing out on a lot in life because on my off hours I am usually sleeping or resting somehow. What a waste of time to sleep your life away. On the days off that I do feel good enough to go out and do something I go but then I pay for it the next day. So to everyone out there with this desease, my heart goes out to you. Be strong if you can and keep on truckin. P.S. sorry about my spelling, never was very good at it. Take care all and enjoy your life to it's fullest the best you can.


email: sheilakeppler@aol.com
Type: Systemic (diffuse or limited)
Date: 01/11/04
Time: 08:48 PM -0500

Note

Hi. I was in my 30's when diagnosed with systemic scleroderma. After a year of frusteration with answers from our medical professionals I decided to take another route. After much research, I decided to go to Germany for a new controversial tratment in a clinic there. At that point I did't feel I had anything to loose except money. That was in 1982 and I have never looked back since. I know I still have the diseas but it is in remission or I expect it is because I am back functioing like a normal human being.


email: srbrk@hotmail.com
Type: Systemic (diffuse or limited)
Date: 01/10/04
Time: 10:14 PM -0500

Note

Hi My name is Sharlene Burke. I am 47 years old. I was told I have scleroderma 2 years ago. Things, life was going ral well with me. I got a position at work that I worked so hard and so long at. I was a deli manager.To me it was agreat acheivement. My fingers werw turning blue when ever I put my hands or fingers in the cooler or freezer. It was quite painfull and it would not go away completely.Then I came down with a bad chest cold that would not go away. My hands and fingers were swollen as were my ankles. Every joint in my body were and still are on fire. To this day I can not make a fist or open any thing with my fingers. I have Raynaulds,acid reflux and gastral disease. I am curently on nepediphine 60mg but fingers still turn blue when cold. I wear gloves all the time, Good warm socks and Idress in layers. I noticed with this disease you get cold you stay cold. I do not know how thi will end but I know I will fight this with all my being and with god as my father I will lick this horrible disease. Hang in ther!


email: sd001j0644@blueyonder.co.uk
Type: Systemic (diffuse or limited)
Date: 01/10/04
Time: 01:00 PM -0500

Note

Hi again. Just a quick note, that my e-mail address has changed from steve.dickson@baesystems.com to sd001j0644@blueyonder.co.uk Thanks, Steve.


email: jsacoco@webtv.net
Type: Systemic (diffuse or limited)
Date: 01/07/04
Time: 10:34 PM -0500

Note

My son Richard was a courageous, brave man. he went to work until his legs and feet were so swollen he could not walk. When it came to the end of his disease he wanted all of his friends and family to visit so he could tell them he loved them.He passed away on May 22,2003


email: steve.dickson@baesystems.com
Type: Systemic (diffuse or limited)
Date: 01/07/04
Time: 12:19 PM -0500

Note

Hi everyone. My name is Steve and I am 42, married with a 19 year old son at university here in England. I'll give you a bit of background about myself. About 11 years ago my dad died of a sudden heart attack at the age of 62. Two years later my mum died of the same thing at the same age. So as you can imagine it was a particularly difficult time, and this is when I noticed my first Raynauds attack. I have spoken to fellow sufferers and this 'theme' of highly stressful situations always seems to crop up, which leaves me to think stress could well be a strong trigger. So using this as a basis, I assumed lowering stress levels may help relieve some of my symptoms. I read somewhere that the drug Fluoxetine had a side-effect of making the body warm, so I asked my doctor if he thought it was worth a try. As you know after a certain amount of time the doctors run out of ideas to help, so he agreed. I must say it was a very good decision because as it is only a mild anti-depressant, it just takes the edge off my negative feelings, which leads to nearly zero Raynauds attacks. So I have been recommending this to anyone who will listen. Anyway I have still managed to continue working, albeit in an office, and still drive my car, even though mobility is now a problem. Also my lungs lost 20% of their use due to the fibrosis caused by my SD, but they have held steady for about 3 years now. So keep your chins up, and warm wishes for the New Year, and hopefully you may take the time to e-mail me. Not many men have this disease, so it's nice to communicate with you all. Steve.


email: dramad52@yahoo.com
Type: Systemic (diffuse or limited)
Date: 01/07/04
Time: 10:39 AM -0500

Note

Hello. My name is Dana- I'm 20 years old and have been diagnosed with Progressive systemic Sclerosis for a little over 10 years. I have raynauds and recently CREST has been becoming more and more involved. I also have Alopecia which made all my hair fall out. It is very hard for me to help people understand why I wear gloves all the time and why I can't do everything they can do. I want to help them understand very much. Right now I am doing very well, I am in college majoring in Theatre. I was offered a chance to direct my own show about anything I want and I would really like to do a performance about Scleroderma. I think raising money and awareness through art is a wonderful way to get the message and all of our experiences out to people. I would like to take the stories of people with and affected by Scleroderma (experiences, humorous encounters, sad memories) anything to show people what living with Scleroderma is like. If anyone would be willing to share their stories with me for the good of fundraising please let me know via e-mail(names can be changed and identities kept anonymous of course)


email: calista.yates@insightbb.com
Type: Systemic (diffuse or limited)
Date: 01/06/04
Time: 05:45 PM -0500

Note

My husband has Diffuse Scleroderma. He has been suffering from numerous, very painful finger ulcers. His Rheumy and Dermo were both concerned about his losing fingertips and possibly entire fingers. The Rheumy attended a conference which had a guest speaker on SD. I need to get the doctor's name ( I can't remember it- he's in New Jersey) but he was speaking about Viagra (25 mg 3xday) as a help for finger ulcers. The Rheumy put my husband on this and within 1 week there was astounding improvement!!!!!! We are thrilled! The pain has greatly decreased and they are healing. Some he has had for 6 months. It makes sense- Viagra increases blood flow. That is why the ulcers occur because there is too much fibrosis in the hands for blood to get to the finger tips. The Viagra has helped immensely! One draw back- our insurance company will only pay for 18 pills in a 75 day period. Viagra is very expensive. We are looking into legal action to get this paid for by the insurance company. But for now the difference is coming out of our pocket. Even with the expense it is worth it!!


email: calista.yates@insightbb.com
Type: Systemic (diffuse or limited)
Date: 01/06/04
Time: 05:42 PM -0500

Note

My husband has Diffuse Scleroderma. He has been suffering from numerous, very painful finger ulcers. His Rheumy and Dermo were both concerned about his losing fingertips and possibly entire fingers. The Rheumy attended a conference which had a guest speaker on SD. I need to get the doctor's name ( I can't remember it- he's in New Jersey) but he was speaking about Viagra (25 mg 3xday) as a help for finger ulcers. The Rheumy put my husband on this and within 1 week there was astounding improvement!!!!!! We are thrilled! The pain has greatly decreased and they are healing. Some he has had for 6 months. It makes sense- Viagra increases blood flow. That is why the ulcers occur because there is too much fibrosis in the hands for blood to get to the finger tips. The Viagra has helped immensely! One draw back- our insurance company will only pay for 18 pills in a 75 day period. Viagra is very expensive. We are looking into legal action to get this paid for by the insurance company. But for now the difference is coming out of our pocket. Even with the expense it is worth it!!


email: skier117@hotmail.com
Type: Localized (Morphea or linear)
Date: 01/06/04
Time: 04:06 PM -0500

Note

Hi. I am a 19 year old girl who suffered with linear morphea for 3 years. When I first noticed it at the age of 16, I had a rough spot on my upper left arm. It had spread over the year. I took Prednisone, but I heard of some of dangers which scared me. I am now using a topical cream and prime rose, its a helps inflammtory. I'm not sure on the effect, but as soon as I do, I will post it on this board. The morphea had spread all my left arm and upper thigh. It is purple most of the time. I know its very depressing to see, but I have saw different skin diseases, and this one isn't too bad. God bless all who suffer. If anyone wants to talk please e-mail me. Also anyone who recommends radiation, please let me know.


email: janscott_58@yahoo.co.uk
Type: Systemic (diffuse or limited)
Date: 01/05/04
Time: 08:45 PM -0500

Note

i am the mother of 25 year old girl from gateshead in the northeast of England, my daughter was diagnosed with systemic scleroderma, with an overlap of lupus and rhumatoid arthritis 9 years ago. If theres anyone out there who would like to chat or who is in the same position as myself get in touch. there doesn`t seem to be be much known about this disease in England


email: mlnak@aol.com
Type: Systemic (diffuse or limited)
Date: 01/03/04
Time: 01:35 PM -0500

Note

Our nine year old daughter has diffuse scleroderma. Her skin has improved but doctors believe she now has lung inflamation (aleolitis) and want to put her on high dose of intravenous cyclophosphomide (cytoxan). We would like to find alternative. Does anyone know of any doctors (New York area) who use either imuran (azathioprine) or cellcept for this? These have fewer side effects. Thanks mlnak@aol.com


email: together@dru.dn.ua.
Type: Systemic (diffuse or limited)
Date: 12/31/03
Time: 11:59 AM -0500

Note

Hi! I'm Ira. I'm 23.Doctors say I have systemic scleroderma. I have had symptoms since my early childhood. All this time I've tried not to think about it. But now it's terrible.What's the sense of living with it? I don't want to devote all my life to curing this desease.


email: flair@sbcglobal.net
Type: Systemic (diffuse or limited)
Date: 12/18/03
Time: 06:21 PM -0500

Note

Hi folks. I found this by checking symptoms on the net, and am wondering if any of this sounds familiar. Hyper sensitive to cold, particularly in hands and feet, difficulty healing infections on cuticles, sometimes leading to deep finger infections, anddifficulty swallowing (feels like a pill stuck in throat for days at a time). Thanks everyone.


email: levans8@everestkc.net
Type: Systemic (diffuse or limited)
Date: 12/18/03
Time: 10:16 AM -0500

Note

my mother had scleradema and my brother has peyronie,s disease is there any conection?


email: DINKIDO45@AOL.COM
Type: Systemic (diffuse or limited)
Date: 12/17/03
Time: 02:36 PM -0500

Note

Hello All, It has been a while since I have been here. Back in 1993, I was diagnosed with Raynauds Disease. It got so bad I lost a half inch off my middle finger of right hand. The pain from the Raynauds was horrible. The I went and had what is called a digital sympathectomy. Since then, when my hands change color it doesn't hurt. Your hads just have a slight feeling that the are asleep. Back in 1997 I was diagnosed with Progressive Systemic Sclerosis. I had the ulcers on the finger tips. But always kept using peroxide on them. So they healed. On Sept 13th of last year, I was getting ready for work and noticed that my heart was pounding extra hard. I went to my primary which in turn sent me to a Cardiologist. I was hospitalized for fluid around the heart. It was during this hospital stay, that my lungs were looked over. I have Pulmonary Arterial Hyoertension. WHich means that the blood pressure in my lungs is not good. When I was discharged from the Hospital a week later, I was discharged on 2 ltrs of oxygen 24 hours a day 7 days a week for the rest of my life. I have since applied for and gotten disability. The Lung Specialist has me on an expensive med called Tracleer. I seem to feel better. But know I still have my limitations. SO all together I have the following. Raynauds Disease, Progressive Systemic Sclerosis - Fluid around the heart- Pulmonary Arterial Hypertension - Acid Reflux and Arthritis. I wake up each day with the knowledge that the good Lord has given me a new day to enjoy. I talk, I listen and I try and help whomever I can not be freightened over the disease. I have done all the crying I can do. I live for every day and Pray for the cure of someday. Most of the time I can be found in an AOL room called Life-Disabled Support. To all those out there, I pray that one day we will find a cure for this awful disease. May Gods Healing Hands touch each and everyone of us in one way or another. Amen. Well, thank you for listening. Take Care God Bless Us Everyone


email: toonter@netzero
Type: Systemic (diffuse or limited)
Date: 12/13/03
Time: 04:23 PM -0500

Note

My name is Dora. I'm 59 I was dx about 3 yrs. ago. I have scleraderma, gerds, raynauds of the hands and feet I have a tumor on my right kidney, and multiple cysts on my left kidney, also diverticulitis and a few other problems. I also was depressed but I have finally learned to except my conditions. I use to worry about everything I couldn't do, but not anymore. I started pottery classes and Ilove it, even though most of my things are a little on the crooked side, but I still enjoy doing it. My classmates know about my condition and they worry about me, if I look tired or if I'm feeling good etc. They became my friends. I love to dance but I haven't gone dancing in years because of the pain and feeling tired. So going to my classes have been a realy big help. I can take my time , I am able to work at my own pace. I encourage everyone to take up a hobby to help take your mind off of your illnesses. I am an LVN but I am no longer able to work, which was the hardest thing to accept. I take care of my 3 yr. old grandson and he does keep me pretty busy otherwise I'd stay in bed all day. I have to force myself to get uppain or no pain, but once I am up and take my medicine I'm ok. I am losing my hair and as a woman that is very hard to accept. I've always had very long hair past my waist so it truly is a total bummer. But after reading some of your stories I feel incredibly lucky, that I am still able to do the things that I can do, even though at a slower pace and in pain, but thank God I can. I don't dwell on what is going to happen to me in the future, I'll cross that bridge when I get to it. God has helped me get through the surgeries, pain, depression, loss of hair (still dealing w/ the last one), what also helps me is to know that there are others out there dealing with this CONDITIION (I don't like using the word disease, we're not lepers!!)so anyone who want to talk tune me in, but be patient (just learning this whole computer thing) but would love to hear from you. God bless eveyone and don't lose faith, just do the best you can, that's all you can do. P.S toonter is my grandson's nickname that is why I use it for my address. I am waiting to hear from you in texas, my homestate.


email: mlranhorn@yahoo.com
Type: Systemic (diffuse or limited)
Date: 12/13/03
Time: 12:52 PM -0500

Note

Hi, my name is Monica. Has anyone out there had to have their esophagus removed? I am facing that surgery and would like to hear from someone how they are coping. My doctors think that I have scleraderma. I have been tested several times and one test always comes back very positive, but then they do another and it's negative. My esophagus is not working and I have ulcers in it. I would greatly appreciate hearing from you. Thank you!!


email: Richard A. Fortin/NUS@NU
Type: Systemic (diffuse or limited)
Date: 12/05/03
Time: 04:08 PM -0500

Note

Richard A. Fortin Oh Ya! guys get it too. I have limited CREST Scleroderma & although my hands are a mess, you have to go on to support those around you. My worst fear is the pain that comes on from Raynaud's due to the cold weather in New England. I believe that mine was caused by environmental - chemical solvents. That's all the time I have now, bye.


email: glen_tweety1@yahoo.com
Type: Systemic (diffuse or limited)
Date: 12/03/03
Time: 06:15 PM -0500

Note

Hello I am doing A report on Scleroderma.I really am intrested in this disease if you can talk to me even though i thinkkk it is preety hard.i would really appreciated everyone i have question to ask and stuff to say.thank you for reading my postit and i hope yousomeone of you answer my if you can answer me in between 2 month because in 2 months my project is due.


email: hfjsdtry34s11@msn.com
Type: Systemic (diffuse or limited)
Date: 11/24/03
Time: 06:57 PM -0500

Note

Hello everyone it's been since the spring time that I had written. Well I had alot of test done since my surgery in February. My lungs are starting to hardening. I"m having a really terrible time breathing. My meds for reflux are up to twice a day now and that's not helping. I found out I have high blood pressure and thyroid and also have ulcerative colitis and Haitial hernia. This all happen after my surgery for my knee just to remove calcium Deposits off. All I know is I'm tired of having this scleroderma taking over my body and well being. It nevers goes away it will always be with you. Boy I just don't feel good. I'm so tired these days more than before. And my body is aching alot lately. And today in Ohio it's really cold and snowing today. That's what I get for living in the northwest of Ohio. Well my family is here have to go Sam


email: principal@elmpark.school.nz
Type: Systemic (diffuse or limited)
Date: 11/24/03
Time: 05:52 PM -0500

Note

Hi there Is there anyone in New Zealand who has scleraderma, who might be able to make contact so that I can connect them with my mum who now is suffering the effects of full blown scleraderma. I know it would help her to know of some one else who she could make a link with, as she struggles to cope with a very rapid deterioration this year. Thank you. Pauline


email: marina.nitschke@xtra.co.nz
Type: Systemic (diffuse or limited)
Date: 11/20/03
Time: 11:24 PM -0500

Note

I have had spur heels and had surgery to remove one. That was about 7 years ago.I am in pain now when walking with both feet, and have to take pain killers,and anti inflammatory drugs.Is there a magic cure for my aching feet?


email: pmkidney@yahoo.com
Type: Systemic (diffuse or limited)
Date: 11/20/03
Time: 10:40 AM -0500

Note

Hello, My name is Pat,I am 33 and in Diagnosis Limbo right now. My Doctor suspects Diffuse Scleraderma/Mixed Connective Tissue disease. I have been having symtoms since early childhood. The symtoms would come and go with no explaination. I have had peril corditus (Enlarged Heart) 3 times, enlarged prostate, enlaged lymphnodes, inflamation in my intestines,unexplained rashes, tested positive for a P-ANCA, and the list goes on and on and on... My latest major problem is with my esophagus. I have erosive esophagitus. Its kind of weird that I am having this problem now. I dont drink alcohol allot, I dont eat spicy food, I dont smoke, and I am in the gym 6 days a week. I take very good care of myself knowing what is potentially lurking around the corner. So now I need to have some more tests done to try to finally get my diagnosis. It has been going on far to long, without being officially diagnosed. I have been to over 32 doctors before I found one that had a clue what was going on with me. At one point I thought I was going crazy, because my lab work ups used to be perfect. Which was in complete conflict of what I was feeling. Sometimes I would get a test back with something a little elevated. Never the same thing twice though...I found that very weird, that something would never appear twice in my blood work. Until recently I did not feel any skin involvement.. The past couple of days this rash that I have had for over 3 months now on my leg has started to stiffen, and I have also had chronic pain in my right elbow for almost 7 weeks now. I have had diahrea 4 to 5 times a days for months now. I have had severe muscle spasms throughout my entire body, with my esophagus being the worst spasm pain I have ever felt. I am setting an appointment with my Rhematologist this week. He is going to be a little upset with me. I have not been in to see him in over 2 years. I was doing pretty good, established a pretty long remission period. The longest in my whole life without symtoms, or atleast very minimal symtoms...But now its time for round 10 of this ever evolving ilness of mine. Time for more needles, tests to see what if anything has developed...


email: CynthiaDTate2002@aol.com
Type: Localized (Morphea or linear)
Date: 11/19/03
Time: 03:06 AM -0500

Note

hello, anyone out there with morphea? im 25 and have been sick for a long time now. jsut had my first child and he is fine. im looking for some skin lightners? or any helpful informaion. please email me and put morphea in the subject line. thank you and i cant wait to hear from you.


email: pgg@microcore.net
Type: Systemic (diffuse or limited)
Date: 11/17/03
Time: 10:17 PM -0500

Note

Hi! Just found this site for the first time. I have had scleroderma for 20 years and have been very lucky. I have had many ulcers on my fingers but they gradually heal with time. They are very painful and occasionally I have to take a pain pill but try to stay away from them. Usually Motrin does the trick. I have been on Prevacid for swallowing and it helps tremendously. I can eat anything now. Before I started taking it, I would actually have to vomit at times because the food wouldn't got down. The finger ulcers are my biggest problem and I would love any tips that others can share about what they do to prevent these and heal these. I exercise, keep my weight down and try to do alot of mobility exercises to forestall what may happen to my joints. I sometimes use a heating pad to place my hands on and I try to avoid any cold objects. My rheumatologist told me she may try me on some nitroglycerin gel to see if that would help if they get bad this winter.


email: pinkstarburst531@hotmail.com
Type: Localized (Morphea or linear)
Date: 11/17/03
Time: 06:06 PM -0500

Note

Hey ya'll! My name is Caitlin Arnold and I have scleroderma. I also have JRA. My disease will go away when i hit puberty and I am 13 so the doctors say it should be anytime now. I am very excited for this stupid disease to go away.


email: slashmaster4u2002@yahoo.com
Type: Systemic (diffuse or limited)
Date: 11/17/03
Time: 05:34 PM -0500

Note

Hello my name is Dave i live in michigan and have had sclero since late 1999 my hands seem to be more on the raynauds side serious cold fingers and recently had an 8 day stay in the hospital trying to reduce the open sores that have opened up on a finger on my right hand but also have the scars on 5 other fingers trying to to find someone that has had the same problems i am a 44 yr old male and close to having 1 finger removed but fighting to save it... any info will help and will pass on all i have learned so far with what meds i have been trying Thanks Dave...


email: pcd2004@yahoo.com
Type: Localized (Morphea or linear)
Date: 11/16/03
Time: 02:11 PM -0500

Note

I had one red spot in 2002 and in 2003 I have 15. After four doctors I fianlly heard the word Morphea. My ankles and feet and now my wrist and hands hurt but not all the time. From what I am reading on this site sounds like Morphea can get really harsh, but the Doc's say it does not get that bad.I even have shortness of breath. Somedays I am so depressed that I just dont know how I will make it thru the day but I do.And I dont know what doctors to see and what meds I should take I am sooooo CONFUSED!!! Why take meds if they dont know if they will work. Iam 44.


email: eveac1@msn.com
Type: Localized (Morphea or linear)
Date: 11/16/03
Time: 02:10 PM -0500

Note

MY NAME IS TAMARA CORE, MY THIRTEEN YEAR OLD SON HAS SCLERODERMA


email: catford@bellsouth.net
Type: Systemic (diffuse or limited)
Date: 11/16/03
Time: 02:07 PM -0500

Note

HELLO,MY NAME IS CATHY.I WAS TOLD THAT I HAD SCLERODERMA AT THE AGE OF 27 IAM 31 NOW I HAVE BEEN REALLY SCARED.I HAVE 4 CHILDREN 4,7,12,14.I'AM REALLY WORRIED ABOUT WHAT IS GONNA HAPPEN NEXT.I HAVE ULCERS ON MY FINGERS.IT SEEMS LIKE I GET ONE HEALED UP I GET ANOTHER ONE.MY SKIN IS VERY TIGHT.SOME TIMES IT FEELS LIKE IT IS GONNA POP.I'AM MARRIED I HAVE A WONDERFUL HUSBAND THAT I THINK WILL BE HERE FOR ME TILL THE END.THERE'S ONLY ONE THING HE CANT SEEM TO BE ABLE TO TALK TO ME ABOUT WHAT IS HAPPENING TO ME.SOME PEOPLE TELLS ME THAT HE IS SCARED.THERE IS NO DOUT THAT HE'S NOT.I KNOW HE LOVES ME HE JUST CAN'T TALK ABOUT IT.HE WONT TALK ABOUT IT TO NO ONE.HIS MOTHER DOES'NT EVEN KNOW.I HAVE NOT TOLD HER EATHER.TO BE HONEST WITH YOU I HAVE NOT EVEN TOLD MY CHILDREN YET.I DONT KNOW WHAT I'AM WAITING ON.I JUST DONT THINK THEY WOULD UNDERSTAND.THEY DO KNOW THAT I HAVE SOMETHING WRONG WITH ME.THEY SEE MY FINGERS WHEN THEY GET ULCERS ON THEM.THEY SEE THEM WHEN THEY TURN SOLID WHITE WHEN THEY GET COLD.MY TOES DOES TO.I HAVE ONE FINGER THAT IS BENT VERY BAD.I WAS WONDERING IF THERE IS ANYONE OUT THERE WHO WOULD LIKE TO TALK.IF SO PLEASE EMAIL ME I WOULD LOVE TO HEAR FROM YOU. CATHY


email: blkberry032003@yahoo.com
Type: Systemic (diffuse or limited)
Date: 11/16/03
Time: 02:05 PM -0500

Note

HELLO MY NAME IS CINDY,I AM A 19 YEAR OLD YEAR AFRICAN AMERICAN ORIGINALLY FROM HOUSTON TEXAS.I WAS RECENTLY DIAGNOSED IN MARCH OF 2001 WITH DIFFUSE SYSMETIC SCLERODERMA.IHAVE HAD THIS DEVASTATING DISESAESE FOR ONLY A YEAR AND A HALF NOW.IT'S SO MYSTERIOUS HOW THIS DISEASE CREPT UP ON ME OUT OF NOWHERE.I WAS IN MARCHING BAND MY JUNIOR YEAR OF HIGH SCHOOL IMAGINE THIS IS ONE OF MY FAVORITE HOBBIES SOMETHING I REALLY CONTRIBUTED TO.WELL HERE WE GO MY SYMPTOMS STARTED TO TAKE THE WORST TURN FOR ME.I SRARTED WITH SWELLING TO THE JOINTS,MUSCLE TISSUES,RAYNAUDS PHENOM AND MOST OF ALL MY MOBILITY IN MY LEGS,HANDS ,AND ARMS SRARTED TO DECREASE. ONE NIGHT THE PAIN GOT SO EXCRUTTIATING MY TWO MOST DEARING ,LOVING PARENTS CONSTANTLY ON MY SIDE TOOK ME TO THE PEDIATRIC EMERGENCY ROOM, I WAS LOOSING SLEEP,malabsorbtion, no appetite, dramatic weight loss I was weighing 238 at the age of 17 now Iam weighing 142 at the age of 19. I continued to have difficulty swalliing which made it very hard to eat, skin tightning which makes it very uncomfortable how you were alwats use to stretching certain body parts.Finger ulcers I just hate them because they leave me with very little to do i have to be extra careful ,if anyone have suggestions on how to improve them please feel free to email me at any time or if any body ever have anything they want to ask contact me with no problem. I will keep and continue to keep God first.He never gives you more than you can bear.That's one thing that i have learned,keep your faith alive and continue to fight that BATTLE! EVERYTHING HE DOES IS FOR A REASON, AND YOU MAY NOT KNOW WHY BUT HE DOES.JUST TO SUM UP MY LITTLE STORY I HAVE FELL SICK TWICE SINCE I HAVE BEEN DIAGNOSED BUT THE LORD HAS TAKEN GOOD CARE OF ME.IAM TAKING ALOT OF ORAL MEDICATIONS AND INFUSIONS HOPEFULLY YEARS TO COME I WILL SEEK A DRAMATIC CHANGE AND BE ABLE TO LIVE AS NORMAL AS GOD WOULD LIKE FOR ME TO.ANYONE FEEL FREE TO CONTACT ME IF YOU FEE LIKE TALKING.GOD BLESS AND KEEP YOUR FAITH ALIVE!LOVE-HOUSTON GYRL!


email: ihave@blackmule.com
Type: Systemic (diffuse or limited)
Date: 11/13/03
Time: 06:50 PM -0500

Note

Thanks for your patience - the techincal problem with the Postit form is now fixed! Amie


email: SWithrow99@aol.com
Type: Systemic (diffuse or limited)
Date: 17-07-03
Time: 11:34 AM -0400

Note

Hi Everyone, my name is Shirley. I was diagnosed with Limited Scleroderma 2 years ago. I have had the symptoms for 10 years plus, but was not diagnosed until I had a biopsy of the skin. Life has been a roller coaster of pain, stiffness and swollen fingers. I currently am taking Vioxx, Flexaril and Ultram to get through my days, but they don't seem to work as well as they did at first. I now have pain that feels like electricity when I walk. It shots through my entire body. The most frustrating feeling!! Please feel free to e-mail me, I don't have a support group where I am, and sometimes life can be so lonely. My family tries very hard to understand. I am so thankful to the Lord for their support. God Bless you all. Shirley


email: BRosalez@msn.com
Type: Systemic (diffuse or limited)
Date: 14-07-03
Time: 05:22 PM -0400

Note

To Everyone with Scleroderma, My mom just passed away with this desease 7-10-03. And as I'm reading all these stories, it sounds all to familiar. Amputating fingers, foot, leg, etc, etc. The last method we were told that may help, was a method called CHELATION. You can go to a chelation DR or even order suppositories over the internet. All I have to say is PLEASE try this method and see if it helps with this disease. Unfortunatly we waited too long to try it. You can also find out more about CHELATION and what it does over the internet. It removes all impurities like mercury, iron, and lead in your blood and then it is excreted out of your body through your urine. Its kind of like filtering your blood, which then can make your blood cells work better to do their job. The only thing is, your insurance medicare, medicade, or gold card doesnt cover it. Its not considered as a "needed" procedure and they think that its classified as a "cosmetic" method. Just like if you want to get braces, the dental ins wont cover it, etc etc. Dont ask me why. But again, please dont wait. I do know it can get expensive and may require 3-6 months of this. thanks, Billy


email: marypette2003
Type: Systemic (diffuse or limited)
Date: 14-07-03
Time: 11:15 AM -0400

Note

I just found that I have scleroderma and rheumatiod artritis the scleroderma is lots of pain and lots of disconfort now that i found out i do lots ofthinking how lucky to have god in my life and my family prayer is the key for me at this point i will be okay and happy and have lots of fun with my family i am a single parent my names mary pette;just stop working because i having been feeling well at all my flexibility is very slow i have five wonderful daugthers and two extra boy-9 girl-10----- two granddaugthers write at (MARY)pobox 80176 shreveport la. 71148 help me under stand whats all new to me i am 48yeras old i havent had much infomation on this please feel free to write me mary...........


email: lyndsey_pickering@hotmail.com
Type: Systemic (diffuse or limited)
Date: 14-07-03
Time: 11:13 AM -0400

Note

hello my dad has had scleraderma and SLE for the past 18 years. He has had his ups and downs with the disease. He has had 2 right femerol artery bypass operations in his legs and has now found out that the second operation hasnt worked. The scleraderma has actact the new artery and if now blocked again. To make matters worst he has now got a hernia because he got MRSA after the last operaton he has had. And has been told by doctors there is nothing else they can do. Is there anybody out there at all that can help me, by dad is only 46 years old and its affecting the whole family badly. Please write to me if you can help or would just like to find out more. Lyndsey Xx


email: ellen66fun@yahoo.com
Type: Systemic (diffuse or limited)
Date: 14-07-03
Time: 11:12 AM -0400

Note

Hi my name is Ellen, I am 37 years old and I was diagnosed with scleraderma in December of this year.I had Raynaud's disease for six years or more.I have had ulcerations on my fingertips and I have almost lost a couple of fingers. My joints are getting worse and I am obese which makes it worse I am sure. I work as a registered nurse on a busy floor and it is really getting hard to cope and live with this disease.I take nexium and vioxx which are not helping. I am so frustrated and scared. I have 3 sons and I want to live and be active, but how can you when your joints won't move........please I need to talk with someone..I am so depressed....ellen


email: annakees58@yahoo.com
Type: Systemic (diffuse or limited)
Date: 14-07-03
Time: 11:11 AM -0400

Note

My name is Anna and I am 44 yrs. old. Last April I thought I had a kidney infection, with having extreme kidney pain. I did not. I have been through scopes of the bowel and kidney to no avail. They thought I had lupus than they said I didn't. I lost my insurance because I had to quit work, so here in Texas I applied for a Gold Card which is free insurance, and to get to see a doctor takes forever. So here I am June a year later and my symptons continue to grow, severe kidney pains all the time now, aches all over my body to where I can't get out of bed, fevers, my eyesight I believe is affected now. My mom passed away with scleraderma Xmas of 1999, and I never thought it's possible I could have it. I started doing research after a doctor said they want to test me, and WOW I have almost all the syptoms, now they are also checking for a tissue diesease. What more could happen. I have been so depressed crying all the time, they have increased my zoloft to 100mg. I have been doing all the research on this, and emailing any doctors that would be willing to take me as research. I want my life back. It has come to a halt. My fiancee has been so supported making sure I don't give up, wanting to take me to emergency (which I refuse cause with this gold card you can sit for hours, one time I was there from 1:00 till 11:00. I can't physically and mentally do this. This health care situation really needs to do something better. Well I can go on and on. I would realy like to hear from people that have this, My mom kept it a secret from us, so I know how bad her pain really was, she started with rhuematory arithris. Thank you Anna


email: shinningstar31@msn.com
Type: Systemic (diffuse or limited)
Date: 14-07-03
Time: 11:10 AM -0400

Note

Im 22, and my mother has scleroderma she was diagnosed with it 5 years ago. First she started getting ulcers at the tip of her fingers then her hands and feet were always cold. Her skin has gotten really tight over the past years, now she has ulcers at the bottom of her right foot but since she also has diabetes they dont get better they just grow more and more every day. She had bad circulation cause of her scleroderma also. We took her to see a vascular surgeon to see what he thought about the ulcers and he said he wanted to do an arteriogram on her to see if they could do a bypass and make her circulation better but for our luck he told us he coudnt do anything but to amputate her leg. I know theres a lot of people out there going through the same thing im going through and i would appreciate your support. May god bless everyone going through this disease its really bad to see my mother going through all the pain and suffering this causes her.


email: bobbigoodenough
Type: Systemic (diffuse or limited)
Date: 14-07-03
Time: 11:09 AM -0400

Note

Hello everyone !! i have read just about everyones stories. I can relate to them all. I live in northern Canada where we reach tempatures of 30 and 40 below, most would say burrr i use to say owwwee. I live with sclroderma also, i'm 34 i'm active and feel great because i changed my life. I'm the most stuborn person you'll ever know when i was told what i had i was bound and determound to beet it, although there is no cure or medication. I take all herbal med's if any advice i can give to anyone interested please e-mail me. Like i said sclroderma will not stop me!!!!! I bike,rollerblade walk, jog, run, lift wieghts, swim, play guitar,and baseball. I work two jobs,clean my house which has 5 levels YES lots of stairs!!no problem... I have a 15 year old son and a active husband my life is very busy, i don't have time to be sick or sit around because i hurt or feel sick. People think i'm about 26 to 28 when they ask me how old i am they are shocked. I can't promise my way of doing things will help you, but you got nothing to loose by trieing. E-mail me and be the person you use to be,do not let sclroderma controle your life... Fight back, and be healthy. Bobbi-Jayne


email: dgucci@mhtc.net
Type: Systemic (diffuse or limited)
Date: 14-07-03
Time: 11:07 AM -0400

Note

My name is Debbie and I am 49 years old. I have been battling lupus, scleroderma, & sjogrens since 1980 but wasn't diagnosed until 1985. I am at this time doing fairly well but have been in and out of hospitals and know the highs and lows of this disease. My mother has sever lupus and I had a sister who died of it when she was only 30. It seems to run in my family but to this date none of my children have been diagnosed with it. For that I thank God daily. I have 3 great kids, one a nurse and 2 lawyers. My husband is wonderful and has stood by my side through the thick and thin of it. I don't know what I would have done without them. My symptoms are to many to name as I'm sure you know. I have good days were I can actually move around with a cane but I also use a walker or electric chair on bad days. One of my biggest hobbies is gardening. I have been limited to what I can do outside but I still get a lot of joy out of growing all my plants from seed. I also love to cook when I can. I would love to email with anyone who is going through what I am. Debbie


email: c354s@yahoo.com
Type: Systemic (diffuse or limited)
Date: 14-07-03
Time: 11:04 AM -0400

Note

My name is Candace. I am 49 yrs old. In my early 20's, I was diagnosed with Reynalds. Over the years I had numerous problems, but no definite answers to explain them. In 1992, my father was at Mayo Clinic in Jacksonville, Fla. While there, I decided to have a thorough check up. They told me I had scleroderma. I had never heard of it. They gave me some brochures and sent me on my way. I was so glad to finely know what was wrong with me. I wasn't just imagining it. Over the years I had problems with IBS, dry mouth, raspy voice, extreme fatigue, weight loss, problems with swallowing, spots on my body, sores on the ends of my fingers(I had a bone spur pop out of the end of my finger after the birth of my son), & mysterious fevers that put me in the hospital. In 1990 at the age of 36, I gave birth to my son. I had a fluxuating temp, and noone knew what to do. I spent 8 days at the hospital while they tried to figure out what was wrong. They never did decide what it was. A year after I found out what I had(but still didn't know anyone else who had it), I saw an article in the paper about the local support group. I called all the names in the paper until I spoke with someone about information. I didn't want to take all the medications with the side effects. So I asked a lot of questions until I found someone with a few answers. I do keep my condition under control fairly well with vitamin suppliments. They work for me, but not sure about others. I would like to talk with others who have similar problems and how they deal with it. People think I have an eating disorder, which I do, but not the ones they think. I need to gain weight and stength. I don't look ill, so people become irritated with me when I am so tired.


email: jolayev1.net
Type: Systemic (diffuse or limited)
Date: 14-07-03
Time: 11:02 AM -0400

Note

I would like to tell you the story of my cousin Beatrice Ann Lopez. She was a beautiful person who was diagnosed with this horrible, cruel illness. She had a strong will to live and fought till the end. She was full of life, she had a beautiful spirit. She passed away on Sept. 18, 2001, she died a horrible death, that tramatized the whole family. Noone deserves to suffer as much as she did, or people like her. Would you please send me a form so that I can write her a tribute. The family didn't come together to help her, I would like to let people know how much people like her need their families support and care. My e-mail address is jolay ev1.net Thank you so much. She is our angel in heaven now and she is no longer suffering, she is at peace.


email: becks@cin.net
Type: Systemic (diffuse or limited)
Date: 14-07-03
Time: 11:01 AM -0400

Note

My mother died from crest in 1999 she had it for 14years and was very brave and handled it very well.She died aterrible death.Before she died she suspected that i have it.I have ranauds for sure been tested the last few years all my symptoms have increased and iave seen more of hers.I hurt when i get up in the morning hurts to walk on the bottom of my one foot my hands and feet swell they hurt when in the cold i have occasional hoarseness.My eyes and mouth are always dry.I hurt all over and very tired all the time.But i am like her i keep going no matter what. She was a very strong person and i miss her veyr much she was my best friend chris


email: carolynsuetoo@aol.com
Type: Localized (Morphea or linear)
Date: 14-07-03
Time: 11:00 AM -0400

Note

My name is Carolyn. I have just been diagnosed with Generalized Morphea. It has affected my stomach upper part of body, and part of my legs. My doctor told me I was a "textbook" patient. I will start Puva Therapy next week. I will be exposed to ultra violet light three times a week. If anyone else have been diagnosed such as I, what was your treatment. I am in my early 60's and recently retired. So much for the golden years. Thank you.


email: Frazervick@aol.com
Type: Systemic (diffuse or limited)
Date: 14-07-03
Time: 10:59 AM -0400

Note

HI MY NAME IS CARL OLIVER I AM 32 YEARS OF AGE I LIVE IN SOUTH SHIELDS IN THE NORTH EAST OF ENGLAND ABOUT 6 MONTHS AGO I STARTED TO GET PAIN AND IN MY HANDS AND THEY WOULD NEVER WARM UP I WENT TO MY GP WHO DIAGNOISED RAYNAUDS ABOUT 2 MONTHS LATER I STARTED TO FEEL VERY WEAK AND TERRIABLE HEARTBURN I WENT BACK TO MY GP WHO THEN SENT ME TO SEE A SPECIALIST AT GATESHEAD QUEEN ALEXANDER HOSPITAL HE DID TESTS THEN TOLD ME I HAD A RARE ILLNESS CALLED SYSTEMIC SCELERODERMA I IMMEDITAELY GIVE ME AN INJECTION TO REDUCE INFLAMMATION IN MY JOINTS HE HAS PUT ME ON PENICCILIME I NEED BLOOD TESTS AND URINE TESTS EVERY 4 WEEKS I HAVE BEEN TRANSFERED TO A TEAM OF SPECALISTS AT A DIFFERENT HOSPITAL THIS I NOW KNOW IS VERY IMPORTANT IN THE EARLY STAGES OF THIS ILLNESS I USED TO GO TO THE GYM I HAVE TRAINED SINCE I WAS 14 I CAN NO LONGER DO MANY OF THE THINGS I USED TO DO BUT I TRY TO REMAIN POSITIVE HOPING THIS ILLNESS DOES NOT SPREAD TO MY INTERNAL ORGANS I SEND ALL MY LOVE TO EACH AND EVERY ONE OF YOU WHO SUFFERS FROM THIS ILLNESS HAVE STRENGTH AND THE WILL OF GOD AND YOU WILL SUCCEED IN YOUR LIFE GOD BLESS YOU ALL


email: Denise
Type: Localized (Morphea or linear)
Date: 14-07-03
Time: 10:58 AM -0400

Note

I am 27 years old and was diagnosed with Morphea at age 26. I descovered bruises on my left leg (calf) when I was about 4 months pregnant with my second child. I didn't go to the doctor until my son was 9 months old. I just figured that it was pregnancy related and it would go away. No big deal. My OB finally suggested that go see a dermatologist. She took a biopsy and and later told me her findings. At this point it hadn't worsened. Now the bruising goes midway up my left thigh all the way down on my ankle. I am also starting to see spots on my arms. I went off my birth control when I read that the hormones could have been responsible for my condition. I am now on my second Doctor and seems to be a bit more familiar with the disease. I have been on 3 different creams up to this point and I go back to the Doctor today I sure to try something different. Has anything worked for anyone else? This just really sucks. Summer is here and I can't wear shorts. Thank god for capri pants! How long does this last? My Doctor says it sometimes just burns itself out. Please contact me if you would like to talk. I really feel like I am in the dark about all this.


email: mikeweir007@hotmail.com
Type: Localized (Morphea or linear)
Date: 14-07-03
Time: 10:52 AM -0400

Note

Hello everyone :) I am wondering if anyone could offer me some feedback, or a few words to help me understand what is happenening to me, and what I might expect to the future. About one year ago, I went to my family doctor and complained of a tightening in the tissues along one side of my neck - he dismissed that there was any noticable change so he sent me off without any diagnosis. Six months later, I noticed a white raised "egg" shaped spot on my neck in that same area and went back to my family doctor - he referred me to a dermatologist and a biopsy was taken. The diagnosis was morphia; he prescribed some steroid cream and told me that this would help "burn it off". When I asked him if I would have to rub this on for the rest of my life, he chuckled and said,"no, these things run their course and sort of tire themselves out usually". Well, after two months of applyiong the cream twice daily, the skin did get softer, and the raised morphia did look like it had returned to the normal skin color and it was no longer as raised. I still felt a "tightness" in the tissues along the neck though. Two months after I stopped the use of the cream, the "spot" seems to have regained it's vigor, and is now twice the size it was!?! Is there anything I can do to reduce the tightness along the side of my neck; should I be doing stretching exercises?? My dermatologist doesn't seem to think that it's a big deal, but we all know that things like this make us doubt anyone's opinion that hasn't walked in our shoes! Are there other treatments that I may inquire about? Am I to expect to get more "spots" even if this is the only one I have had for alomst 18 months now; or, would more spots have appeared by now? Thank you all for your time and patience reading my plight. Mike :)


email: jeanannbarker@btopenworld.com
Type: Systemic (diffuse or limited)
Date: 14-07-03
Time: 10:51 AM -0400

Note

I am 40yrs old ihave 6 children and live in Pontefract in England with my husband.I have progressive scleroderma and raynauds.I have had the disease for 6 yrs, and have had chemopharpy to try and ease the disease but it was unsuccessful.


email: family.mckeown@btopenworld.com
Type: Systemic (diffuse or limited)
Date: 14-07-03
Time: 10:51 AM -0400

Note

Hi, I'm Marie and I'm from England. Is there anyone else on this website from the UK or are you all from the States? Isn't this site marvellous? I've made so many friends already. SD's hardly heard of in England so there wasn't really much for me to go on. I think it's great the way we can all share info and support each other, and it's helped me to keep a positive attitude. Best wishes to all and lets keep fighting whatever it is we're up against!


email: greta_oneal@hotmail.com
Type: Systemic (diffuse or limited)
Date: 14-07-03
Time: 10:49 AM -0400

Note

I am a 44 year Black female who has had scleroderma for 10 years that also led to having a left hip replaced.90% of the time I feel great. I exercise try to eat "right"....sometimes the affects of the scleroderma reminds too about my eating. I have a healthy faith background,supportive family and friends. I have been taken the medicine penicillamine 250mg 3 times a day for about as long as I have had scleroderma. Some people that were in my life are no longer because....mainly they were scared.. of the unknown. anyway. Thanks be to GOD he brought me this far and each day hence.


email: JENARY@HOTMAIL.COM
Type: Localized (Morphea or linear)
Date: 14-07-03
Time: 10:46 AM -0400

Note

HI MY NAME IS JENNY I'AM 38YRS OLD MARRIED WITH FOUR CHILDREN. I LOVE TO SPEND MY TIME WITH MY CHILDREN AND MY MOTHER.I WORK FOR THE CALIFORNIA CANCER CENTER IN THE LABORATORY.I WAS DIAGNOSIS WITH MORPHEA/LINEAR ABOUT 6YRS AGO.I HAVE SPOTS ON BOTH MY LOWER LEGS AND ON MY ARMS,AND ACROSS MY NOSE AND CHEEKS.I ALSO HAVE RAYNAUDS,BUT ON BOTH FEET.MY LAB RSULTS ARE ABNORMAL SUCH AS MY ANA,SEDRATE,MY RH FACTORS.MY DOCTORS SAID THAT ITS VERY RARE FOR PATIENTS WITH MORPHEA TO HAVE ABNORMAL LABS,SO IT MAKES ME NERVES,BECAUSE I'AM JUST WAITING AND WONDERING IF I'LL EVER HAVE PROBLEMS WITH MY INTERNAL ORGANS. I DO FEEL TRIED AND MY JOINTS HURT,BUT NOT ALL THE TIME. AS FOR MEDICIATIONS I ONLY TAKE IBUPROFEN AS NEEDED. YES I HAVE AJUSTED AND UNDERSTAND THAT I'AM VERY LUCKY. SOMETIMES I FEEL VERY SCARED BECAUSE I DON'T KNOW WHAT MIGHT HAPPEN,BUT GOING TO WORK EVERYDAY HELPS ME BECAUSE I DEAL WITH PATIENTS THAT HAVE CANCER. I TRY TO STAY POSITIVE FOR MYSELF AND MY PATIENTS. I LOVE HELPING PEOPLE AND HELPING THEM DEAL WITH WHATEVER PROBLEM THEY MIGHT HAVE,AND MAKING THEM SMILE MAKES MY DAY.WHEN I WAS DIAGNOSED WITH SCLERODERMA,I PURCHASED THE BOOK AND FELL APART. I DON'T THINK THAT MY HUSBAND UNDERSTOOD WHAT I MIGHT BE UP AGAINST,BUT THEN AGAIN HE'S NEVER BEEN VERY SUPPORTIVE.I DO HAVE A CLOSE FRIEND HER NAME IS ANGIE SHES LIKE A SISTER TO ME,BUT HER TO WAS IN DENIAL. I LOOK FOR SUPPORT IN ALL THE WRONG PLACES.IWAS INVOLVE IN AN AUTO ACCIDENT AND TOTAL OUT MY CAR,BUT KNOW I HAVE BECOME COMFORTABLE WITH MY DIEASE,AND UNDERSTAND IT BETTER. I DON'T WORRY ABOUT WHAT PEOPLE MIGHT THINK ABOUT MY SPOTS ON MY FACE OR ARMS,AND LEGS. I GIVE THANKS TO GOD FOR GIVING ME THE TIME WITH MY FAMILY AND FRIENDS.


email: rvmcreigh@aol.com
Type: Systemic (diffuse or limited)
Date: 14-07-03
Time: 10:44 AM -0400

Note

I was dignoise in 1999 at that time the progression was progressing really fast the Doctors called my family in to explain the disease and what options I had. It was in my lungs and my forarms were hard as bricks, I constantly coughed. They sent me to Detroit to see Dr. Mays, she put me on cytoxen intervenosly for a year. My hair fell out ect. Thanks be to God it did slow it down. I know am on varity of medicines, Tracleer is the newest one I'm on. I pain and I'm on lots of pain medcation, I had to stop working. The skin is not as bad but I scratch all the time the Doctor told me thats the skin progessing. I have a heart murmur. Ihave Pulomary Hypertension. I'm so tire all the time. But I thank God for my good days and for my bad days I've learned to listen to my body. because I use to get so confused if I felt ill wheather I should call my primary Dr. or The Lung dr. or the rumatologist. Oh, Well I await to hear from someone else. As far as my family is concerned. I really don't talk about it much because I think because they are somewhat in denial or just it's just their way of dealing with it, and I respect that I don't want their sympathy I just need to vent sometime.


email: gemini20646@aol.com
Type: Localized (Morphea or linear)
Date: 14-07-03
Time: 10:43 AM -0400

Note

Hello, My name is Patty. I from East Texas and I'm 38 years old. I have not been formally diagnoised yet, I went to a dermatologist about a spot on my left leg right above my ankle. I noticed it about 6-7 months ago. It never went away so my mother talked me into seeing a skin doctor. He first said maybe exema (not spelled right I know)but then he said morphea. He asked me alot of questions then took a biopsy. I got a call at the end of the week that the dr. wants to do some blood work. I've been reading up on morphea and am scared. Will these blood tests tell what form of morphea it is or what. Please if anyone can enlighten me please write.


email: ChrisLk2006@aol.com
Type: Systemic (diffuse or limited)
Date: 14-07-03
Time: 10:42 AM -0400

Note

My name is Chris. I am 14 years old. My Mom was diagnosed when i was only 6. She hid it for as long as she possibly could.My Mom was the bravest person I will ever know.And I believe that about every person out there suffering from this disease.My Mom fought until she could fight no more. I like to think that she defeated that horrible disease even through death. My Mom and i had a special connection. I will never love anyone again the way I loved her. For everyone out there still fighting your battle: press on. There is a cure, we just have to find it. By the way I have this theory about chemical plants causing it. I live in the Tennessee valley in Alabama and there are a lot of cases here. We also have a lot of plants like Wise (Reynolds) Alloys, TVA, Oxydental, ect. Could everyone please e mail me and tell me if you live near a plant like these.Thanks.


email: sissyjust1@netzero.net
Type: Localized (Morphea or linear)
Date: 14-07-03
Time: 10:40 AM -0400

Note

First of all Hello to all. You are probubly here because you or someone you love has been told they have scleroderma. I myself was told about three years ago. I have Morpha. I have thirteen spots ranging from the size of a dime to the size of a fifty cent piece. They are mostly on my back and stomach area, but I do have one 1" dia spot on each upper arm and a 2" spot on my thigh. When I got the first ones on my arms I thought they were bruises. When they didn't go away and more were appearing it seemed like daily I got scared. It took months to get the courage to go to the doctor. My doctor knew right away what was wrong but ordered biopsies done to be sure. When she told me what was going on I was so scared. You see in 1991 my best friend died of scleroderma her name was Estella. She had Systemic Sclerosis. She was beautiful. When she was in a room it lit up. We were such a team in highschool! We did everything together. My daughter was born on her birthday, her daughter was born on my wedding day. She had a handicapped child, I had a handicapped child. We were so tied together. So here I was again feeling like I was continuing this strange connection. This was a condition I had through United Way donated money for reserch and had limited information about. How could it be happing to me? I did findout that what I have is different from Estella's. For this I'am thankful. I foundout that over time the spots could fade,but I did have a larger one on my shoulder covered with a beautiful tattoo of tiger lilies. It worked nicely! I foundout that what I have are just spots and they don't change me. I also foundout life is short and the things that you do and the people you touch can last forever. For whoever reads this my prayer is that you will find the peace within yourself to go on and reachout to others who my be hurting too. Take Care God Bless


email: xhotSaucx@hotmail.com
Type: Systemic (diffuse or limited)
Date: 14-07-03
Time: 10:38 AM -0400

Note

Hi, my name is Pamela, I am 22 years old. I haven't been actually diagnosed with scleroderma, yet. So far I have had an EGD, upper endoscopy, upper GI series, a motility test, and now I have to see a dermatologist. My doctor says that so far all signs point to scleroderma, but he won't talk to me about what that actually means until he knows for sure. Does anybody have any insight to the gastrointestinal involvement with scleroderma? I feel so lost right now, I can't seem to find a straight answer on any of the websites that I have gone to. I went to a nose and throat doctor on Friday (they found polyps in my throat during the last endoscopy); she told me that she wouldn't tell me anything about scleroderma because she didn't want to scare me - like that helped!! I feel helpless and lost...I would like it if anyone who is or has been in my situation could please email me, even if is just to talk. thank you Pamela


email: mom_o_chris@hotmail.com
Type: Systemic (diffuse or limited)
Date: 14-07-03
Time: 10:37 AM -0400

Note

Hi my name is Tammy. My mother was diagnosed two years ago with this disease. She is 52. She is a fighter and fighting this with all she has. We see it getting worse and I don't wnat her to be in pain or to suffer at all. I really could use some people to write to me to let me know what is ahead and some people who have ways of making life easier for her. Please write to me. mom_o_chris@hotmail.com


email: Oxy80CrazyGirl@aol.com
Type: Systemic (diffuse or limited)
Date: 14-07-03
Time: 10:36 AM -0400

Note

We are writing about our sister and aunt who was diagnosed with scleroderma and raynauds syndrome in 1993. She is a single mother with a 17 year old daughter and a 14 year old son. Her fingers are continously cracked and swollen. During the cold weather her fingers also turn blue and purple caused from the raynauds syndrome. All of her fingers are tight and stiff which remind you of a dead persons. Both joints in her pinky fingers have already deteriated as well as both joints in her thumbs. Her feet are always swollen and when she is on her feet a lot her legs also swell. She also has no joints in her ankle bones. She has been put to sleep during 2 different sugeries to stretch the tubes in her throat in order for her swolling ability to improve. Her first surgery was in 1998 and the most recent one was in December of 2002. Everyday she struggles very hard with her hands and fingers, especially since she holds a job cleaning 4-6 houses per week. She is fighting the disease day by day, hoping that someday someone will find a cure for her disease. My sister is one of the best people in the world. She has the kindest heart of anyone that I have ever came into contact with. She is one of those people that has never smoked a cigarette or drank a beer in her lifetime. There have only been a very few times that I have heard her say a curse word. That was only because she was very upset and aggervated. Everday I pray for her to get better and pray that someday soon there will be a cure for her painful and heart-aching disease. If anyone would like to respond to us you can e-mail us at Oxy80CrazyGirl@aol.com. We are wanting as many responses that we can possibly receive. Thank you for taking the time to listen to our story about my sister and my neice's aunt Gloria Day from Mount Vernon, Kentucky. Thank You.. Cassandra Falin and Natasha Mcclure. Please respond to this story. All responses will be greatly appreciated.


email: hfdtry@adelphiannet
Type: Systemic (diffuse or limited)
Date: 14-07-03
Time: 10:35 AM -0400

Note

Hello, my name is Sam. I'm 37 years old and had Raynauds since I was 21 years old. I have three children ages 20, 18, 17 and two step-children 21, 18. I was diagnois with scleroderma back in 1996. I have problems with the reflux also and I'm always tired all the time. I just started taking procardia again for the third time before I had quit taking the medicine because I didn't think it was helping me. I had to have them look at my esophgus and was told I have barrets disease. That was back in 1996 also. I take Nexum for that but now I'm experiencing back up at night. I know I'll have to have the scope go down there again. This Thursday I'm having surgery on my right knee, I have calcinois (calcium deposits) and it's been acting up every three years so now I'm having surgery and hopefully that will be the end of that. I wished I had more energy than I do. My children never understood why I'm so tired all the time. I try to explain but thay think it's not real. I don't blame them because I'm there only parent that is alive. I know they worry about me and they love very much as I do them. I wish they would understand. I just remarried this past October. I haven't told anyone about the way I feel because when I do it's always you never feel good. And that's like a spack in the face. I started getting red dots on my face, make up hides them pretty good. I have reddish looking hicky or rash on my neck that's there all time, every now and then it itchy's really bad. My skin is very dry but I can handle that. Well I better go if any one would to talk I'm more than willing, It would be nice to hear from someone that has the same illness I have. Sam


email: doglasser@attbi.com
Type: Localized (Morphea or linear)
Date: 14-07-03
Time: 10:28 AM -0400

Note

I have had Morphia since I was a pre-teen . I am now 42.It never really bothered me until recently as it is spreading .I also have diabetes and Cushings syndrome. Is Morphia always a part of scleraderma ? My Father had it for over 25 years. What if anything can I do about it ? Who do I turn to for help? Plz e mail with any info, Doreen doglasser@attbi.com Thank you so muc


email: lirpashowers2@webtv.net
Type: Systemic (diffuse or limited)
Date: 11-07-03
Time: 02:33 PM -0400

Note

OOOOOOOOOOOOOOPS! Wrong address on my site below, I added an ,! Here is the correct address: http://lirpashowers.250Free.com/LosingFaceIHaveScleroderma.html Hope this helps everyone! L&H's, April


email: lirpashowers2@webtv.net
Type: Systemic (diffuse or limited)
Date: 11-07-03
Time: 02:28 PM -0400

Note

I also made a website to help victims of scleroderma, lupus and arthritus. It is called "Losing Face, I Have Scleroderma". The address is: http://lirpashowers.250Free.com/LosingFace,IHaveScleroderma.html I felt compelled to do this after getting many responces from my story here and when one womans daughter wote me to write her because she had all but givin up so I made this site. I still have a whole page to add links to still but you will find useful links to websites. My story is there, facts page of scleroderma and other pages will be added. I hope this helps anyone who is a victim to this and other connective tissue diseases. From one victin to another, God bless! I also had an ultrasound on my abdomen and I always talk to the techs so I had told them about the sclero and the tech had said something about cacifications to the assistant and he said to her, you have never seen them before and she said yes but never so many. I said are talking about the vessels and he said yes, it is common in sclero victims. I mentoned this to the doctor and even though I smoke (which I am trying to stop) he said that can cause calcifications but I am 41 and for there to be that many I would have to be 60 or 70 even if I smoked to have so many cacified vessels so it is the sclero. I told him I know it is diffue but we would wait till it can be firmly diagnosed....lol, I know my body and have seen and feel the changes. Chin up everyone, I can only cry for so long, gotta smile and laugh through all of this or go nuts..lol! Love and hugs, April


email: lirpashowers2@webtv.net
Type: Systemic (diffuse or limited)
Date: 11-07-03
Time: 02:18 PM -0400

Note

April here again. I put an alternate email addy cause the other is full right now. I saw the rhuematologist the 2nd time and he put me on mobid for the arthritus which has hit my legs, elbows, wrists, and hands. Me finger swelled about a month ago and pretty much stay like that. I had a ct scan of my lungs and it showed no damage thus far but as the doctor said when she saw me, if I am in early stages, it is good but they have to watch it since all aspects lean towards diffues with GI involvement. But it could take a while for a firm diagnosis and when I get hot, my face gets really redin a patteren across the middle of my forehead, across my nose, across my cheeks that stops at a certain point, I have no idea what it is but told the doctor, I wouldn't be surprised to have overlap of lupus too....lol, thats just how things go for me. I have adapted to the changes as I always have. I am trying to still get disability and will ask my doctor if she can list me as disabled to see if that will help. I have looked up the qualifications and it is considered if it affects at least 1 major organ. I am always tired as usual, that has never changed. My legs get weak when I sit for a while and stand upo they are stiff along with my ankels, when I walk, they hurt, when I bend over, they hurt. I just have gotten used to it. Updates when things change. April


email: srollins@trinitycounty.org
Type: Systemic (diffuse or limited)
Date: 10-07-03
Time: 06:04 PM -0400

Note

Iam 48 years old and have had linear scleroderma or morhpea profundus since I was about 7 years old. I am so sorry to see how prevelent it has become, I can tell you I have had to remind myself I could have something worse, so many days I hate my body, lets face it everyday I hate my body. I am just thankful I am older now and its easier to cope with. I have never been told of any helpful medications, and have never been given a reason for this condition.


email: kminniek29@aol.com
Type: Systemic (diffuse or limited)
Date: 05-07-03
Time: 11:41 PM -0400

Note

i have scleroderma andraynauds i also have ulcers on my fingers i have been treated with pain pills for the past four years .i am in pain all the time some times i cant get out of bed just this week i was given a new med the name is cuprimine . i have been on it for four days .i cant tell you if its helping as of now i hope that it will help me soon i hope your mom gets help real soon and tell her not to give up. lee


email: kupchurch@foothillsnet.net
Type: Systemic (diffuse or limited)
Date: 03-07-03
Time: 05:13 PM -0400

Note

I'm looking for anyone who has information on scleraderma of the lungs. My mom was dignosed yesterday 7/2/2003.She also has raynauds.We know very little about the disease.Please e-mail me with any info. Thanks, Tisha


email: mrsbubbles98@hotmail.com
Type: Systemic (diffuse or limited)
Date: 01-07-03
Time: 11:37 AM -0400

Note

Hi everyone, my name is Shelly and I was diagnosed with Mixed Connective Tissue Disease 2 1/2 years ago after the birth of my son. Now they found masses around my hip bones. They did a biopsy and found only fatty tissue. I wondered if this could be the scleraderma in those joints? If anyone has any suggestions, please email me.


email: svhill@gw.rev.state.ga.us
Type: Systemic (diffuse or limited)
Date: 25-06-03
Time: 03:18 PM -0400

Note

Hi, my name is Shamell, I don't have scleroderma, however, my supervisor has it and she tells me about it frequently. If you have any questions you want to ask, I'll be more than happy to ask her and get back with you. She has ranyaud's, systemic scleroderma, lupus and rheumatoid arthritis. She has had it since 1991. She believes that all of this was caused from being exposed to asbestos. What do you think?


email: jsacoco@webtv.net
Type: Systemic (diffuse or limited)
Date: 22-06-03
Time: 12:17 AM -0400

Note

MY son was diagnosed in 1994 when he thought he had caaught his finger in a folding chair.It turned out to be gangreen,it never healed. He lost his finger.After surgery onn the veins and arteries he went into a remission, until 2001 then he started to sound hoarse and his esofagus started to bleed.From that time on he never felt good Terrible pain in his legs Lots of swelling.All his organs started to break down.and we lost him a month ago.


email: dimples311@hotmail.com
Type: Localized (Morphea or linear)
Date: 18-06-03
Time: 09:42 PM -0400

Note

Hi, my name is Carrie James and I am a 21 year old college student. I am sorry to say but I don't have scleroderma, but I have a big interest in this disease. I am in the medical laboratory program at my college and I have been researching autoimmune diseases. If anyone would like to share their story more indepth with me (such as the serological tests they used to diagnose, the symptoms, and the medication they might be on). Please email me at dimples311@hotmail.com and thank you:)


email: Maggie_Banner@yahoo.com
Type: Localized (Morphea or linear)
Date: 17-06-03
Time: 01:50 PM -0400

Note

I am a 20 year old female diagnosed with Linear Scleroderma when I was 11 years old. It started on my left thigh, progressed down to my foot and ending on my toe (next to the smallest). It is also on my lower back. At the time i was told I was the only person in NC to have it. I am now married to a US Marine and am having problems finding a naval dr that knows anything about this disease. Is anyone else having any of these problems? Maggie


email: kewl_kat_88@hotmail.com
Type: Localized (Morphea or linear)
Date: 17-06-03
Time: 01:21 AM -0400

Note

Hi, I am Katy. I am 14 years old and i was told not too long ago that I had Linear Morphea. Mine is different then any others I have read about. Mine is on my chin and is spreading but..very slowly..(thank goodness) I am on a medication called plaquenil. My joints in my knees and my lower back have just started to hurt me.This is a side affect to the morphea supposively. I am very scared because I love to cheer,dance,and do gymnastics. People often tell me i have dirt on my chin, I just ignore them. If anybody has symptoms like mine. please email me! I would love to talk about it!


email: Torrez_M@msn.com
Type: Systemic (diffuse or limited)
Date: 16-06-03
Time: 04:05 PM -0400

Note

I have CREST syndrome with 5 amputated fingers (I am male) and most organs affected. Any other person with same symptoms?


email: tvasquez@co.weber.ut.us
Type: Systemic (diffuse or limited)
Date: 13-06-03
Time: 02:21 PM -0400

Note

My mother is trying to get on disability because she no longer can work, but the social security and state disability programs have no idea what scleroderma is and what are the effects, is there a great site out there that has all the information i could send them to?


email: peteymc@wabash.net
Type: Systemic (diffuse or limited)
Date: 11-06-03
Time: 11:34 PM -0400

Note

I am looking for someone who has some information on disability for someone with scleroderma. If you would send me an e-mail with any information that you have, I would be most grateful. Thanks so much, G. McDowel


email: ensleyj@charter.net
Type: Systemic (diffuse or limited)
Date: 02-06-03
Time: 04:15 PM -0400

Note

I don't have scleroderma but a good friend and secretary at one of our elementary schools in the county where I live in Tennessee does. She is taking medication for it and plans to return to work next fall. I am very proud of her and hope she continues to improve. She is a special person.


email: skategirl813@aol.com
Type: Systemic (diffuse or limited)
Date: 29-05-03
Time: 01:21 PM -0400

Note

Hi my name is Jen and my grandfather has scleroderma pretty bad. We thought physical therepy might help? Is that a good idea? All he does is lay in bed all day so he is very weak. As of right now he is on minocycline. From what we have heard this is the medicine to be on! Has anyone had any good results with it? Or any other medication? We will take any advice or suggestions to help make him feel better! Thanks so much!


email: chandrak@kirby-india.com
Type: Localized (Morphea or linear)
Date: 27-05-03
Time: 05:28 AM -0400

Note

I have a daughter, 3 years old, with localised scleroderma. She was diagnosed after 6 months or so only, by a skin specialist. I have not come across a specialist doctor in Hyderabad, India, who can comprehensively treat the condition. Meanwhile, she is on medicine and she is given bovine colostrum and MSM crystals, which is seemingly improving her condition. Chandrasekhar.K


email: colin.becki@virgin.net
Type: Localized (Morphea or linear)
Date: 26-05-03
Time: 03:37 PM -0400

Note

Hi, my name's Becki. My son Ethan (5) has linear morphoea, only recently diagnosed. He's on methotrexate. We're in the south of England. Is there anyone else out there from the UK? The consultant has seen the disease before, but does not have much experience with it. Is there anything else I can do? Does anyone have any experience of sucessful treatment? Does it ever go away? Thankfully its on his leg, so we're praying it doesn't go further around his body. But it is affecting his foot. Thanks for reading! Becki


email: angelbv94@yahoo.com
Type: Systemic (diffuse or limited)
Date: 25-05-03
Time: 10:04 AM -0400

Note

My mom died of the crest kind in 1999 before she died she supsected that i Have it i have all the same symptoms I ahve been diagnosed with raunuads already I get very hoarse tired all the time I hurt all over my hands and feet get very cold and turn blueish and red.I have been having sores around my mouth and and in my nostrils my gums hurt alot my eyes and mouth are very dy please someone help me my mom is no longer here to talk to i had a blood test done in 1999 they said there was nothing thereI n the morning it hurts to walk on the bottom of my right foot the bottom hurts most of it seems to be on the rigth side of my body chris


email: sab19611@aol
Type: Localized (Morphea or linear)
Date: 21-05-03
Time: 06:21 AM -0400

Note

my 13 year old girl has sclerderma on her body. i very worried doctor sent us home with no info and it getting worse.


email: kristitaylor610@netzero.net
Type: Systemic (diffuse or limited)
Date: 20-05-03
Time: 12:58 PM -0400

Note

I have not been diagnosed as of yet but i feel it is coming very soon. I have a 2 yr old and a wonderful husband. I'm not ready to leave them. I'm very scared because of the uncertanty. I have all of the symptoms. It's just a matter of time. So please if you can help me please reply!!!


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