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My struggle with scleromyxedema
In November of 1991, I was vacationing with my family in the Bahamas and noticed bumps on the back on my neck when applying sun lotion. Three months later in February 1992, I noticed it had spread up and behind my ears.
I went to the dermatologist who did a biopsy because she did not know what the problem was. The report came back that it was granuloma annulare. During the next two years I went back to the doctor on several occasions with changes and was still told it was the same condition.
In March of 1994 I went to get a second opinion and at that point, with blood work and biopsies, the diagnosis was scleromyxedema. I was informed that no drugs were given, but I could try interferon injections. It had not been tried for this disease, so I was told it would be a trial. Additionally, I was told there are no side effects as interferon naturally occurs in the body.
After the third shot I felt aches and pains, which they said I would experience. However, the 4th shot caused me to have severe muscular pain. I was take to the emergency room, admitted and given Demerol.
The next morning I went into respiratory arrest and for four days was "hanging in the balance". I could not walk nor stand, but slowly regained ability to do both. After this episode my condition was totally in remission and my skin normal again for a two-year period. It has now all returned.
There is so little known about this condition and those with this diagnosis need to be in touch for support. Please contact me (info@scleromyxedema.com) or call 410.742.7843. I would like to share information on what medications have been used in my treatment, and what results occurred.
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