I've had CREST for several years. I developed a severe finger ulcer that was partially under a fingernail at one point. My PCP had recently retired, so I visited the "Doc in the Box" that bought him out and saw a physician assistant. I explained to him that I had severe Raynaud's and was concerned that the ulcer was infected. He assured me that it wasn't an ulcer, I had a fingernail fungus. He said, you know, you probably got that getting your nails done. I held up my hands with their thickened cuticles and rough nails and said, look at these hands! I've never been to a manicurist!!!!!. He insisted and gave me a prescription for Lamisil. Later, I got in to see my rheumatologist who couldn't believe he put me on an anti-fungal!
I was working at a hospital and had to go to a meeting where a well-known medical professional was introducing a new insurance policy to the hospital's employees. Part of the "sales pitch" for this one-option only policy (to take it or go uninsured), was that if we have regular, long term meds, we will have to either have them mail ordered to our homes after the third script, or pay three times the retail price for all scripts thereafter. Imagine prednisone at three times the retail price! She went on to say that if we take medication for diabetes, we could get a 25% discount. I mumbled (in the front row) "Wow! Makes me wish I could trade what I have for diabetes." She replied with a cocky laugh, "NO. Nobody wishes they had diabetes." I said, "You've never heard of scleroderma, have you?" I started to get up and leave, and couldn't believe she actually replied, "No, I haven't. But I know you wouldn't rather have diabetes."
After telling a 'friend' of mine that I have linear scleroderma in my face, and explaining to her what it meant, she said, "Wow how can you live with that? If I where you, I'd commit suicide!" I never talked to her again.
I went to my GP
and complained that my nailbeds were hard and sore and that I had Raynauds. He
grabbed my hand looked at the icicle aka my finger and said 'do you smoke,
cause, people who have Raynauds and smoke get gangrane and have to have their
fingers cut off. A few months later I complained about my hair falling out. He
looked at my scalp and said looks healthly to me. I then complained that I
couldn't extend my right arm all the way and that my shoulder was in extreme
pain. He said, 'gee, you should really get that looked at.' I thought I was.
Needless to say I found a new doctor who immediately diagnosed my with CREST and
referred my to an excellent rheumie.
After my precious Mother struggled and suffered with Scleroderma and CREST, undiagnosed, for over eight years, she passed away from destroyed lungs and heart damage in our local hospital. Her heart specialist was out-of-town, and when I called his office the next week, as a matter of courtesy, and told his receptionist Mama had died a few days before, this idiot of a woman said, "Oh -- well then I'll cancel her appointment for next week." It was very fortunate for the receptionist that we were separated by a phone line. My beautiful, compassionate Mother was gone, the victim of a cruel disease, while this receptionist creature, in my opinion, was merely taking up space in the world.
When I was first
diagnosed by a rheumatologist she did the tests and when I went back to her for
the results her quote was, "You have scleroderma". I asked her what did we do
for it her answer was "Nothing it is FATAL". She walked out and said to make an
appointment for 3 weeks later. Needless to say I never returned.
When telling a co-worker that I had scleroderma her first response was "Change your drivers license to a non-donor. I sure wouldn't want my family to get any of your organs".
doctor who diagnosed me said, as if I should have expected it, "Yep, it's
Raynaud's." After a long pause as I expected him to expand on that, I asked what
that is. He said, "It's a vascular disease, and you have the antibodies for
Scleroderma. I don't have any information for you but you can find it on the
internet and I will refer you to a rhumatologist." At least he spelled it out
for me before he left the room!
But my rhumatologist was worse. He had exactly ten minutes to spend with me and every time I tried to answer his questions he cut me off. He finally said that if I'd had the disease as long as I'd had symptoms, I'd be dead by now! He said this on his way out and I haven't seen him since!
When a new employee came into my office several months after I was diagnosed with scleroderma, she overheard me speaking to someone about my symptoms. She later asked me what I had. When I told her she said that her friend's mother had been diagnosed with the same illness, but had had trouble finding someone to treat her in their small town. We chit chatted and I was glad to hear of someone who wasn't dead. Little did I know. Several months later I asked her how her friends' mother was doing. Her face went pale as she said, "you know I thought about this after I spoke to you. She actually died about 2 years ago. I didn't mean to mislead you. Sorry".
I have both
Rheumatoid Arthritis and Scleroderma. One day while I was in my seventh grade
science class, my teacher was talking about diseases and someone brought up the
subject of Arthritis. My teacher told them that they didn't have to worry about
getting Arthritis yet, because "only old people get arthritis." I got so mad at
her, because I was diagnosed with arthritis when I was only eight years old.
Another time, there was a kid who was walking behind me in gym, and my scleroderma (which I have had since I was four) is on the back of my leg, and of course I was wearing shorts. In front of the whole class, he yelled, "*my name here*, ARE YOU ANOREXIC?!?!?" I turned a bright red, because even though my leg is very thin, the rest of my body is also on the thin side, so I didn't know if other people would start to believe that I was anorexic. Later that day, I decided to tell that kid that I was very offended by what he said and I explained to him the reason my leg was so skinny. He apologized, but I still get little remarks about it from people.
A co-worker said to me, "Well you have a very patriotic disease, that's neat."
I was officially diagnosed with Scleroderma, I went to the lab for a big list
of tests to rule out this and that and try to narrow down this problem.
Again, not yet knowing what was wrong, they had problems getting the needle
into a good vein. By the time the lab technicians had tried 3 people on me,
they finally switched to a "child's" needle, saying I had small veins. Of
course the pokes at me had made me sick to my stomach by this time and I asked
to lie down. One of them replied that I should have told them in the
beginning that I get sick easy and they would have started me in the
horizontal position. She proceeded to tell me to "quit resisting and hold
still" while she pricked the end of my finger to get the final test. When I
got the diagnosis a few weeks later, I wanted to go back to that lab so bad to
tell them how badly they needed to learn some compassion. After all, they are
in the medical field; they will see people with medical problems every now and
I was with a
fundraising group selling tickets to benefit scleroderma research outside of a
huge liquor store. One party animal looking biker guy said "Sclero-wha? That
sounds Like something I should have."
My rheumatologist sent me to an ENT because I was having problems with my throat. My voice was very hoarse and I kept getting laryngitis. The ENT orderd and MRI of the soft tissue of my throat. He was out of town when the results came in. He never called with the results so called the office insisting on knowing the results. the nurse faxed the info to the ENT and he faxed back an statement that she read to me over the phone She said "they couldn't see anthing wrong on the MRI so my hoarseness must be due to my Scuba Diving" She couldn't even read his writing and misinterpreted it, but in the file she had in her hand - she would have seen that I never went scuba diving in my life(it was one on the questions in the doctors health background form I had filled out) she didn't even know what scleroderma was!!!
While struggling to get my fingers to move enough to get my money out of my wallet, the checkout clerk snarled, "What are you doing honey, waiting for your nails to dry?"
The first rheumy I went to explained that I had CREST. When I asked him what it was, he mumbled some $10 words and stuck a brochure in my hands from the Scleroderma Foundation. On one of my next visits, when I mistakenly referred to my CREST as scleroderma, he went ballistic and told me I didn't have scleroderma, only CREST!!! He was such a moron that he would spend more time talking about being on the board of directors at his synagogue than giving me any explanation as to the symptoms that were cropping up with my disease. I finally got sick of this guy when I called him for results of some tests and he didn't bother calling me back for 2 weeks. Found another rheumy who told me that, yes, I had scleroderma, just the CREST variation. (He also was caring and didn't give me his resume on visits!!!)
When I was having all the weird symptoms and the joint pain increasing, my GP sent me to a rhematologist that said "don't you worry, that's my job" and calls me @ home and says it is inflammatory arthritis she thinks. I accept it although my GI symptoms didn't fit that diagnosis. About 3 months later, I show up @ the GP's office in terrible pain and swelling and say "What is this? I'm getting worse every day!" The GP says ,"It's the progression of the scleroderma". I am mortified. 1) I feel the specialist just plain lied to me & 2) I am a RN (Bachelor Degree) and I can understand medical info of all kinds. Needless to say I never returned to that particular specialist again. I can do without expensive fibs
I visited an gastroenterologist due to stomach pain. He didn't even examine me, just said, "It's your CREST. Come back when you can't swallow. I'll put in a feeding tube. I'm putting one in for a lady in the morning." I replied I may need a feeding tube someday, but you wont be putting it in. I went to a female gastro. That was 4 years ago. Thankfully I'm still swallowing.
co-worker told me that my "fake tan application" looked awful. (linear
6 months of hesitating, I finally decided to go to the Doctor and tell him about
the symptoms I was experiencing. Once I was finished he asked me if I ever read
the book "Emotional Intelligence". My reply was no. His
advice: buy "Emotional Intelligence", read it and get the prescription filled for Paxil (an anti-depressant) right away!!!
A colleague at work saw my handicap card for my car for the first time, when I first got diagnosed. She exclaimed "you sure are lucky to have the handicap card." I offered her the card, if she would take the disease with it.
When I was diagnosed with scleroderma, I had to take pictures before I started treatment for the skin only (they didn't know what to do for the organs). when I went in to get the pictures taken i had to stand there in my underwear and bra, and they didn't match, I was already embarrassed just standing there getting my pictures taken in my underwear and my bra, and the guy came in and said "Well isn't this cute?" and I said "Whats cute?" and he said "Well don't you feel like a Victoria Secret model, but without matching underwear?"
I am constantly asked how I stay so tanned, and people wish they had my skinny legs. I have lost most muscle mass in my legs because the skin has hardened on my ankles and tops of my feet and it is very difficult to maintain muscles in my legs. Would someone say that to a person in a wheelchair? I think not.
have scleroderma and accidentally got pregnant while I was on Penicillimen and
Plaquenil. Needless to say, my husband and I were very concerned about the baby.
I didn't have any morning sickness, but a co-worker of mine was also pregnant
and had extreme morning sickness. I am sure she didn't realize what she said,
but none the less, it really hurt. She said "I would love to change places with
you...you are so lucky." I couldn't believe she said that. I responded, "Okay,
let's see...you will be sick for a few months but have a perfectly healthy baby.
I do not have morning sickness, but may have already damaged my baby's health,
and I am stuck with an illness for life. Okay, you arrange it, and I will gladly
change places with you." She was speechless. Incidentally, I lost the baby a
short time later and was unable to get pregnant again. I am still sick, and she
has a healthy baby boy.
took my son to our family Dr for his regular check up, he wasn't in and there
was a lady to take his place that day. When she was looking at his leg during
his physical she said OH MY I think we need to wash a little better...........
He has linear on the right side of his body....... I was so mad I made her
apologize to my son and we walked out. My son ( 9 at the time) said boy she
doesn't have any manners....
I was diagnosed in March 2001 my doctor told me that I have an illness called
scleroderma. Never hearing the word before I said ," IS THIS
SERIOUS?" He said yes it is. Then he proceeded to tell me to go home, get a
good support group and read all you can on the internet!!
Once I Was donating plasma and the nurse had to get a blood sample from my finger. When I gave her my hand she saw the brown spots on my wrists and asked why didn't I wash them off and I told her I couldn't and she suggested that I use an antiseptic and scub hard with a look of disgust in her face.
I was once riding one of the little carts at Wal-Mart and an acquaintance asked, Are you trying to draw attention to yourself? I said, if I wanted to do that, I could sure think of better ways to do it than this! She turned on her heel and walked off.
I was diagnosed 17 years ago and have all the classic symptoms of CREST . Recently I went to a GP for a chest cold and after the consultation the doctor walked out into the crowded waiting room with me. He called across the room to his nurse asking her to make a diagnosis of the red patches across my nose and cheeks. He said in a booming voice, "Isn't it the best case of scleroderma you have seen? Fascinating! ". Well every pair of eyes in that waiting room was riveted on my face. Some doctors are the most insensitive so and so's.
I was scheduled for a "complete" physical the day I was given the diagnosis that I had scleroderma (and was misdiagnosed with the systemic form instead of morphea). When the rheumatologist was done with me, he called upstairs to the gynecologist, and I heard him say "she's on her way--she's a very pretty girl, you'll enjoy examining her". Yikes!!!!!!
A few years ago I had a terrible ulcer on my finger that lasted for more than a half of a year. The rheumatologist that I had at the time was a jerk. After seeing me for a couple of visits, he looked at it , scolded me and said "This is your fault".
I was diagnosed 17 years ago and have all the classic symptoms of CREST . Recently I went to a GP for a chest cold and after the consultation the doctor walked out into the crowded waiting room with me. He called across the room to his nurse asking her to make a diagnosis of the red patches across my nose and cheeks. He said in a booming voice, "Isn't it the best case of scleroderma you have seen? Fascinating!" Well, every pair of eyes in that waiting room was riveted on my face. Some doctors are the most insensitive so and so's.
When I was finally diagnosed my kids pediatrician gave me the number of my local support group. When I called and told them I had scleroderma the response was "Oh, you don't want to have that"...I guess I missed checking the "no" box on the form!
This winter was rough on me, so I went to the doctor (for my yearly check-up) with a list of the things scleroderma had been doing to my body: fatigue, muscle aches & telangectasia had increased, I couldn't drink carbonated beverages anymore, my arms were going numb and tingling at night, one fingernail was falling off from repeated Raynaud's attacks, and G/I episodes were sending me to bed. Plus, I confided, I was extremely depressed with all these new developments. When I'd finished, the doctor looked up and said, "So, other than that, you're doing well?" As I roared with laughter, tears pouring from my eyes, I managed to choke out, "Yes, other than that, I'm feeling GREAT!" I must admit though, when I'd regained my composure, she was decent enough to apologize for being so zoned out.
I was referred to an internal medicine specialist after my PCP told me I have Raynaud's but may have another problem (scleroderma). So, I go to see this 'specialist' and spend a good 30 minutes talking. He doesn't think I need any tests but he wants to consult with another doctor and will call me within a week to send me for more tests. 3 weeks go by and I call the office and leave a message. 1 week later he calls and says ''you have Raynau's." WELL, DUH!!!!! That's got to be the biggest waste of $140!!!
You want to talk about insane doctor's visits? On a second visit with a dermatologist I had briefly seen several years earlier, I indulged on an opportunity to severely embarrass this doctor, who, during the first visit, was incredibly pompous, absent-minded and made it quite clear that he had "bigger fish to fry" than me. So, he comes into the office with several residents and immediately began to refer to me as though I were a guinea pig, pointing, prodding, and using big medical terms to show off for his darlings. Well here's the part I indulged in - he was discussing how he had successfully treated me for MELANOMA. The jerk must have gotten me confused with someone else. I let him jabber away for about 5 minutes as he went into detail about how he first made the diagnosis, his methods of treatment an so on - things that had never even happened!!! I finally put him in his place by explaining what my MORPHEA was to his shocked residents. I don't think I've ever seen somebody's face turn so red.
I was trying to figure out how to tell my boyfriend that I had been diagnosed with Scleroderma, but I didn't quite know how to explain it in a way that sounded optimistic. I explained that I had an auto-immune disease in which my body formed scar tissue... basically my body was turning on itself. He said, "Wow! You must really hate yourself!" I still smile when I think about that! I dumped him a few months later.
On my first visit to the rheumatologist, he sat down and very disgustingly said "So, why are you here?" I said "Because my PCP sent me. " He seemed annoyed, but did a thorough exam and confirmed that I did indeed have scleroderma, but said to see the dermatologist - in other words, don't bother him. As I was leaving, he said "Is that a wig, or is that your hair?" I couldn't believe it. Now, I am paranoid that people think I am wearing a wig!
Whilst on the merry-go -round searching for a diagnosis for all my "weird" symptoms, I had a neurologist tell me there was nothing wrong with me except that I read too many women's magazines!
When people ask me, "Where did you get that beautiful tan?", I make up islands that I have been to! They never think to ask that I have been in work everyday and would have no time to visit these exotic, non-existent islands!
When I first found out I had Scleroderma I told my supervisor. He asked me what that was and I said my organs were all fibrosing and turning hard like stone. He laughed and said "Well we could always use you for a doorstop."
I was on my way to go on vacation - when at the airport I went to get breakfast at a coffee shop - I get my breakfast, I walk to the cash register when the girl at the register said "My God what happened to your hands - were you in a fire"? What a way to start my vacation!
Whenever I have been in the hospital, everyone says "oh, what a beautiful tan you have, have you been to Florida?" I say, no, I have scleroderma, and their faces drop. Also, my doctor brings all of his student doctors in to show me off. He says here is a nice lady with a classic case of CREST syndrome. I told him I'm going to start charging him.
My sister is an RN and lives out of state. When I first received my diagnosis, I thought she would be a good one to ask questions of, have some discussions with and receive support from. I booked a flight for a short stay with her. At first she wouldn't believe me. Then said "Well, if that's what you have, I feel really sorry for you because your body will literally turn to stone. Would you like to read about it?" Well, I still visit her, we still do sisterly things, but we don't talk about my illness!!
After about 15 years of dealing with various symptoms that would come and go and move around, I was diagnosed with CREST. The rheumatologist who made the diagnosis was very attentive and helpful...until, at a later visit, I told him that my husband thought I was a hypochondriac. After that his whole approach changed. He said, "It's not so bad having CREST, is it? (In his defense, I do have to admit that I am not as bad off as many of his patients.) I was trying to fit all the pieces of this puzzle together, with his help, so I was telling him lots of symptoms. He told me that I worried too much, and asked me if I was under a lot of stress. He told me I was a very healthy woman...COME BACK IN THREE MONTHS! I haven't been back! When I went to my dermatologist with ulcers on my fingers (at the age of 10), the doctor treated them as warts and tried freezing them!!! He froze my "warts" for 6 months and as I cried out in pain he yelled, "Stop screaming and sit still! If you washed your hands more these warts would stop spreading!" What a JERK!!!!!
When I first developed Raynaud's, I went to my family doctor. She looked at my hands and said "I hope it isn't scleroderma because if it is you will end up on a dialysis machine." Then she sent me to a surgeon for a diagnosis because she said he could cut nerves to the hand and keep this from happening! When talking to a co-worker about my diagnosis of Scleroderma I had said to her that you just do not know who it will strike and her response was: "I am too busy to get Scleroderma". Oh, that explains why I was struck with it, too much free time!
As my hands were turning colors, red, blue and then white, I went to the Dr. and he said "Make them do it." I said, "I can't make then change." "Well, if you can't make them change colors I don't know what's wrong." Then he gives me a bag of ice to hold until it melted all over, and says "Guess there is nothing wrong with you."
Then another Dr. told the intern who was helping him "She can make her hands turn blue and be deformed like that 'cause she just wants the steroids.
Plus when they were explaining it to us the Dr. said "When it gets to your heart and lungs you will be 6 ft under the ground." Nice thought, right?
Before, I was diagnosed my rheumatologist told me that it was normal that my fingers were blue and with ulcers, because this is what stress can do. So he sent me to a psychiatrist and told me to come see him again in 6 months.
As I was tearfully telling one of my local friends that I had an incurable disease called "scleroderma", she pepped right up and asked "Oh, neat. Is that one of those new fad diseases?"
When I first went to a dermatologist to see why the skin on my arm began to harden, the old dermatologist said to my dad, "Hey , she's a very pretty girl. She doesn't have to worry, she can get by with her looks." What a jerk!!!!
My rheumatologist said it wouldn't be so bad having
scleroderma: "Look at it this way, you won't get any wrinkles on your face."
My doctor also said "Good news. You don't have lupus you have scleroderma."
When my mom was having problems getting the insurance company to pay for claims, the insurance company told the counselor handling my mom's plight (on speaker phone with my parents present ) that "she should just learn to die by herself. "
I had been diagnosed as having Scleroderma by a competent rheumatologist. In the meantime I got pneumonia and went to my regular G.P. who was not there so I had to settle for his stand-in. As he was examining me he looked at my arms and asked if I had been in a fire and been burned. I told him I had scleroderma. His response was, "What's that?" I just hoped at that point he knew what pneumonia was. He did, whew!
Early on in my visits with my Rheumatologist, I asked him what I could expect in the future. He told me at least I wouldn't have to worry about wrinkles. Not very reassuring.
When I first started to not feel well and then got progressively worse my local GP ( my husband's second cousin) said: " I see horses and donkeys... you are a Zebra. Zebras we send to Duke"
At my first appointment at Duke they were able to diagnose the SD right away. I have such a "classic case". I asked the doctors if I was a "zebra"... he laughed and said no.....but I did have some horizontal stripes..
After the movie "For Hope" aired, I was on the news with 2 other members of our support group to show that scleroderma patients can live full, active and long lives. During the next week I received about 30 phone calls from patients who didn't know about the support group.
One lady told me that when she was diagnosed in 1995 the doctor told her that this condition was so rare that she was probably the only person in Arkansas that had it. Was she surprised to walk into our support group meeting and see 17 other patients. She even met someone who lives about 3 blocks from her!
Someone said to me: "Oh, you've had this for 15 years? You're lucky to be alive, it could be worse." #$%&!!!
Back when I was newly diagnosed, I asked a rheumatologist about my prognosis. She got very bright and perky and said, "Everyone with scleroderma thinks they're going to die from it, but that's not necessarily true. I knew one woman who was sure she would die from her scleroderma, but she was hit by a bus."
When I went to see the first rheumatologist to get a diagnosis, he told me he knew what it was, but wouldn't diagnose it because it "may cause problems getting health insurance later in life".
One dermatologists said to a friend of mine "I don't know what it is, and there is no cure for it and to learn to live with it" then proceeded to write a prescription.
The first time I had digital ulcers, I went to see my family doctor. He said "How'd you do that?"
One time during the summer, a friend looked at my legs and said, "Do you have on panty hose?"
My rheumatologist at the time of my diagnosis of scleroderma: "If it looks like a duck, walks like a duck, talks like a duck and acts like a duck, then it's a duck. This is a duck".
When I was searching for a diagnosis, one neurologist told me [after a 10 minute exam] that there was nothing wrong with me and my symptoms were probably just due to old age.
"The original physician I saw about my "blue hands" told me I probably had scleroderma and then said he would love to answer my questions, but he had to go..."
"I asked a few nurses "what do you know about scleroderma?" one said "it's something you don't want to have.." another said "I 've seen some people with it on Oprah..."
"When I was finally diagnosed with Scleroderma, my two doctors excitedly said, "Look, look, the distal pad on this finger is gone already". That just happened to be the finger I stuck in the meat grinder when my brother was turning the handle."
"I went to see the rheumatologist because I was feeling sick. He said I had the flu. (A trip to the emergency room revealed that I really had scleroderma renal crisis.)"
"My rheumatologist said that my hands would eventually look just like leather work gloves. The only difference would be that I wouldn't be able to take them off at the end of the day."
"Before I was diagnosed, my doctor (at that time) said I might have scleroderma. I asked him what it was and he said it would make my arms look like branches on a tree and my skin would look like the bark. "
"My rheumatologist said there was no such thing as physical therapy for people with scleroderma."
"When I first started taking penicillamine, I got terribly nauseated. I was having these violent retching attacks and my food tasted like repulsive garbage and I couldn't eat. I called my rheumatologist to find out what to do. He said to try sucking on a lemon drop."
"When my rheumatologist called me in to give me the results of tests he had ordered, he told me, 'You have a rare incurable disease called scleroderma. Here are some pamphlets to read and if you want to know more, you can go to the library.' With that he left the room. I sat there with my mouth open thinking I was going to die."
"I went to have some X-rays taken. The technician said she recognized what what wrong with me because 'My best friend has squirreloderma.'"
"The first rheumatologist called me on the phone and the message was, you are one sick girl, come in and we will talk about your esophagus having arthritis. I promptly went to him the next morning, and he told me, first of all you are one sick girl...and you will die within 7 years if you continue to have stress in your life. I started to cry, and he handed me a paper towel, and said get use to it, and walked out of the room!"
"My second rheumatologist came into the room to exam me, and asked me do you have any great gourmet recipes for CHEESE!"
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