Ro M: Scleroderma

After six months of suffering, I have just been diagnosed with scleroderma. I would like to share my story and would appreciate any thoughts and comments as all of this is so new to me.

After two easy pregnancies, my third child was diagnosed in utero with complete congenital heart block. I was tested for lupus, Sjogren's, SS-A and SS-B antibodies. All tests were negative. After delivery, I hemorrhaged and subsequently had over twenty blood transfusions over three months until I finally had a hysterectomy.

I had always been healthy and active and almost immediately, things changed. I was constantly tired, run down and plagued with infections. I thought I was working too much and started to take things easy, but nothing changed.

Multiple elevated liver function tests made way for a liver biopsy, which was inconclusive. My left ovary was removed in November of 2004, and for the first time in a long time, I felt great. I was losing weight, energetic and feeling like my old self.

A month later, I began dental work to have a bridge put in. After the initial appointment, my mouth was swollen and I had a brief episode of Bells Palsy. I ended up in the emergency room (ER) on January 1, 2005, with swelling and joint pain in my hands, feet and abdomen. I was told I had an allergic reaction to the antibiotic and pain medicine combo I was on, given a shot a benedryl and sent on my way. The swelling continued to get worse and the joint pain was unbearable.

For the next six months, I was sent to four different doctors and diagnosed with everything from erythromyalgia to panic attacks. There were days when I literally could not get up out of bed unassisted. The swelling and tightness took over my extremities and I was barely able to function.

I finally saw a specialist who diagnosed scleroderma, even though I have yet to have a positive ANA titer. Has anyone heard of this? He also suggested speeding up the progression so the disease can go into remission more quickly. Any thoughts on this? Any help with this would be greatly appreciated as this is new to me.

~ Update 12-23-05 ~

It has been a crazy six months! I think I have been to every doctor under the sun, but I am finally starting to get some concrete answers. I would greatly appreciate any comments, thoughts or suggestions anyone may have as I am still in the early learning stages about this condition.

I was diagnosed with diffuse scleroderma in July, although my rheumatologist suspected it two months prior. I have a negative ANA titer, negative scleroderma antibody tests and no Raynaud's. I do, however, have skin tightness and swelling, capillary changes and a daughter that was born four years ago with complete congenital heart block. After baseline testing, it has been discovered that I have esophagus and lung involvement. I will be having a lung biopsy soon before the next course of treatment can be determined.

I am trying to remain optimistic, but that is getting harder and harder to do.