Scleroderma Support Group
Scleroderma is a rare, chronic disease characterized by excessive deposits of collagen. Scleroderma affects the skin, and in more serious cases it can affect the blood vessels and internal organs. The most evident symptom is the hardening of the skin and associated scarring.
Hi! I have a lot of questions. I am female and 50 years old, I was diagnosed with limited scleroderma (CREST syndrome) in 2015 after having an ANA test done because I had aches and pains that would move from joint to joint and by the end of the day I could hardly walk because of the pain in my feet. My nurse practitioner/chiropractor who did the test sent me to a Rheumatologist, he had me go have some extensive breathing tests and blood gas test which came back fine, he then told me to come back in 6 months because I didn't have any symptoms at that time. He didn't really do an exstensive evaluation, just asked me what was wrong and read the results of the blood tests. I went in struggling with a terrible cough which he said was the indigestion and the pain in my feet was old persons arthritis. His advise was not to eat rice, potatoes, chocolate, alcohol, pop and coffee. I thought he said gluten but I'm not sure about that, I'm already gluten and lactose intolerant and I am pretty good about staying away from the gluten and milk. Now here I am a year and a half later with terribe indigestion and a hiatal hernia which I can't really keep under control unless I stop eating. I was on Prilosec for many years then went off it for a good year because I didn't it to do damage, went back on it 19 days ago and the cough is still horrible and controls my life. I can't stop coughing! Here are some other symptoms I have but don't know if they are related to the scleroderma or not. Hair loss (a lot,) red swollen hands, dry skin, hands, feet and dry eyes, and hypothyroidism, ringing in my ears and hearing loss, frequent urination, constipation, heart palpitations and fatigue. I don't want to go anywhere, I'd rather stay home and my thoughts are how can I quit my job because I feel like crap all of the time.
I went to my regular doctor this week because of my allergies and indigestion and told him about the scleroderma, he said that those test were probably wrong because all my other blood work from the original tests look fine and my kidneys should indicate something so he didn't think I have it so I started investigating limited scleroderma more.
I would like to know whether or not I need to see a Rheumatologist that specializes in limited scleroderma or not? Do I just listen to the Rheumatologist I saw before? I don't want to always be guessing if a symptom is part of the scleroderma or not. I need to have someone walk me through this if this is truly what I have.
Does scleroderma progress slowly or quickly? Does the amount of stress you are under seem to increase the symptoms?
I'm so sorry for the book and all the questions. I thought maybe with all my information out there it would help you understand me and what I'm dealing with. I feel like this test just hangs over my head.
I appreciated any guidence I can get.
It is my understanding that the horrible disease of scleroderma varies greatly from patient to patient, fast/slow, dramatic/not, various symptoms and remission varies as well. Knowledge is key to your plan of care.
I went to so many doctors before I got that diagnosis. Listen to your gut and seek out more information.
I think the disease is different with each person but I have a lot of the same symptoms you do.
CREST Syndrome consists of the following:
C) - Calcinosis: calcium deposits in the connective tissues
(R) - Raynaud's phenomenon: where the hands and feet turn white and cold and then blue, in response to cold or anxiety
(E) - Esophageal dysfunction resulting in swallowing difficulty
(S) - Sclerodactyly: thick and tight skin on the fingers, caused by an excess of collagen deposits within skin layers.
(T) - Telangiectasia: small red spots on the hands and face that are caused by the swelling of tiny blood vessels.
I am 71 years old. Six months ago I was diagnosed. I have all five of the symptoms. I started with severe acid reflux 10 years ago. I finally found a specialist who agreed to do an endoscopy. I had 2 ulcers. At this time there was not a connection. Then about five years ago I started noticing Raynauds syndrome. This was accompanied by swelling hands, dry broken skin. Then six months ago I developed a large knot on my finger. One morning I woke up and it was swollen and turned black. I went to the emergency room and was recommended I see an orthopedic surgeon. He took and MRI and told me I had Calsinosis caused by Schleroderma. I was sent to a rheumatologist and a pulminary specialist. There is no cure, however, I am taking several meds to arrest the progress.
Shop until you find a good doctor and start treatment. This is nothing to ignore.
I understand the need to shop around but she is an NHS patient and we can't afford private treatment. What can we do to press for an official diagnosis and treatment? The usual gp -> specialist route is not working for us as there is always a cog in the wheel that blocks us before we can actual get a referral to somebody who can officially diagnose her.
On her medical records the current diagnosis is fibromyalgia, which we have been told by doctors is what the NHS tend to put down when they can't actually agree on what is wrong with the patient.