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Tommi: Diffuse Scleroderma

The doctor had no answer and suggested gently that it might be depression.

I was diagnosed with scleroderma in November 1998. My main problem had been my neck, shoulders, and back, but now the problems went further than that. I had two fingernails which had separated from the nail bed, and my nails had vertical ridges. From talking with my naturopath, I came to the conclusion that my body was not assimilating enough nutrients to keep my muscles in good enough shape to hold my bones in place. I have gone to doctors very seldom and when I did try to find out what was going on in my body some years back when there were all these "little" things that were not quite right, the doctor had no answer and suggested gently that it might be depression.

Eventually I discovered that cutting out sugar and dairy brought relief to most of the symptoms and I did quite well for a couple of years. That was when the more serious problems began. In November of 1997 it seemed everything in my back shifted and x-rays the chiropractor took showed my spine was crooked, but he was so rough that the pain and problems worsened. That was when I found the naturopath that was able to help me considerably. However, I did not feel well until when the weather warmed up. I knew I needed to find a doctor before next winter, and I did in October. She suspected scleroderma after talking with me for about forty-five minutes. I had had trouble with my throat closing up and difficulty swallowing, had Raynaud's, and dry eyes. The blood test confirmed the diagnosis.

In December of 1998 I had a different problem that left me very weak, and I drank carrot juice usually with a little kale thrown in, three times a day for about a week. After a week my scleroderma went into complete remission. My muscles and joints were looser than in a long time and the throat problem disappeared. The remission lasted for six weeks and I still (mid-March) rarely have any trouble with my throat.

Unfortunately, about two weeks ago I began having shortness of breath. I had noticed that before, but only first thing in the morning. This was chronic, and then I began having chest pains. My doctor is three hours away, so she told me to go to a local doctor and have a chest x-ray. This doctor urged me strongly to have an EKG. I really did not think it was my heart and neither did my doctor, but when this new doctor called me at home urging me to have the EKG, I decided to go ahead. The result of the test showed that I did not have enough circulation to the heart.

I just found this out several days ago and I have not been able to reach my doctor since then. The local doctor just told me to take it easy and go see a cardiologist. I have been using only natural methods to treat the illness, and hope to continue to do so, but I would like to talk with others who have heart involvement. There is so much I want to know. Most of what I have read on the Net has been too technical, except that the prognosis is poor. If anyone would like to share with me, I would love to hear from you. Thanks so much!

To Contact the Author

New email address needed 07-19-06 SLE
Old Email Prefix: tsryan
Posted 3-19-99

Story Artist: Shelley Ensz
Diffuse Scleroderma
Heart Involvement
Go to Toni: Spouse of Stem Cell Transplant Survivor

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)