Patient Comments: Scleroderma - Symptoms and Signs

What are your scleroderma symptoms and signs?

Comment from: Megan, 65-74 Female (Patient) Published: March 17

I have been diagnosed with incipient scleroderma. The biggest problem I have is quite annoying Raynauds which means although I live in Spain where the weather is quite warm. I still have to wear gloves also my nose gives me terrible trouble. The bridge of my nose seems to have hardened and I feel as if my nose needs clearing all day and it affects my breathing. Those are my most troublesome problems I also have trigeminal neuralgia which does not help.

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Comment from: bonniemare, 35-44 Female (Patient) Published: March 30

I am 39 years of age and was diagnosed with scleroderma about 11 years. ago. It's been tough. 19 surgeries, many hospital stays not to mention ALL the doctors appt.'s. It is in my lungs, pancreas and that darn rash you get on your face that follows down my body. Also I have 2 kids and it breaks my heart that they are watching their mom getting sicker. It seemed to take off full speed. I've been on chemo and all those drugs. Never again will I do that.

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Comment from: Mama, 55-64 Female (Patient) Published: January 11

I have been battling with Scleroderma for about 8 years now. I have the systemic which involves the lungs and Esophagus and digestive end of it. I also deal with the Raynaud's. So far the only thing that has helped is the oxygen that has helped the muscular skeletal part of it. I am frustrated as to why the doctors don't just automatically do the stem cell remedy which from my research has delivered excellent results.

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Comment from: Donna, 65-74 Female (Caregiver) Published: June 23

My mum was diagnosed with scleroderma over 12 years ago, it has now attacked her lungs and kidneys as well as her throat in conjunction with Reynaud's and various other symptoms. My mum is also diabetic. In relation to scleroderma mum kept going to the doctors in the early stages with constant chest infections, and they kept giving her antibiotics. Mum was finally diagnosed and then volunteered to be part of a research program for this disease. The chemicals that have been pumped through my mum is endless and extremely toxic , she's has had 8 Chemo Therapy treatments, she was on cyclosporine, prednisone and various other drugs not including her diabetic meds.Then they wanted her to go on Methertrexate. The Researchers have now deserted her and she now relies on her lung specialists for everything. I am ashamed at the way the medical Research profession involved with my mums case have treated her, she served their purpose and now nothing.

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Comment from: sew1088, 45-54 Female (Patient) Published: April 08

I am 49 years old was diagnosed with Systemic Sclerosis about seven years ago, started with leathery patch on left leg tightness on face arms and hands then went to Reynaud. I am currently doing better however I am still tired most of the time and have muscle and joint pain and having minor lung problems. I am happy to wake up everyday and enjoy my family and life. Please do not feel alone because you're not.

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Comment from: Gooser, 65-74 Female (Caregiver) Published: March 30

My wife was diagnosed with scleroderma in 1994. During the last year or so, she has had parts of toes and fingers amputated. Several weeks ago she had the toes on her right foot amputated. Just last week she had the toes on her left foot amputated. Tomorrow, she has her left foot amputated. Not sure what to expect from here on out.

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Comment from: Meisha, 25-34 Female (Patient) Published: January 19

When I have a scleroderma flare up, it usually affects my fingers. I develop very hard nodules on the tips of my fingers that are very painful to touch. Sometimes I develop yellow crusty sores on them, and I have to take antibiotics to heal it.

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Comment from: geoff, 75 or over Male (Patient) Published: December 10

I have had Scleroderma for about 5 years. It affects my skin, mouth, etc. I now have a swollen ankle that could be thrombosis.

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Scleroderma - Describe Your Experience Question: Please describe your experience with scleroderma.
Scleroderma - Treatment Question: What kinds of treatment, therapy, or medication have you used to manage symptoms of scleroderma?
Scleroderma - Types Question: What type of scleroderma do you have?

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