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Heidi: Difficult Diagnosis of UCTD

"I am thankful for the loving support of my adoring husband and my family."

Sunset for Heidi by Sherrill Knaggs I am forty years old and was diagnosed with undifferentiated connective tissue disease (UCTD) about one year ago. Approximately two years ago, I started noticing that my hands would go numb at night. I mentioned this problem to my general practitioner during an annual checkup. She thought that I had carpal tunnel syndrome and sent me to a neurologist for an electrical conduction test. The neurologist said it was doubtful I had carpal tunnel, maybe borderline in my right hand, but my left hand was normal. Both hands went equally numb at night. The neurologist asked whether or not my doctor had checked for Raynaud's or Lupus.

I then got on the Internet and started reading about Raynaud's and Lupus. Although my hands are always cold, I had not yet noticed any changes in coloration. When I read some of the symptoms of Lupus, however, I wondered if that was not what was going on with me. At that point in time I was experiencing a lot of fatigue, had six oral ulcers over the previous two months, and experienced frequent bouts of dizziness and headaches. I also had been complaining of pelvic pain which occurred sporadically for the previous two years.

So, I called my general practitioner and asked if we could do a test for Lupus. My general practitioner called me about a week later to tell me that I did have an elevated ANA test, but that the specific test for lupus had come back negative. She said that the test suggested I did have some type of autoimmune disorder and she referred me to a rheumatologist. When I saw him, he indicated that I had puffy fingers and thought it was odd I did not have more wrinkles on my forehead. Nevertheless, he did not give me any diagnosis or tell me anything was wrong. He just asked me to come back in six months and we would see how things had progressed.

The next six months were unremarkable, except for two things. I developed tiny, pinpoint size, sores on the tips of my fingers. The sores lasted about one month and then disappeared. I also noticed a hard area on my skin appearing at the base of both index fingers, but it was a very small area. At that time my hands also felt somewhat burnt and itchy. I described the feeling to others as being as if I had been clapping my hands together for quite some.

When I saw the rheumatologist again in November 2001, he gave me the diagnosis of undifferentiated connective tissue disease (UCTD) and said that I might be developing scleroderma. He said I could take Plaquenil if I wanted to. I told him that I was not experiencing any symptoms that were impairing or interfering in my daily functioning in anyway, and thus, did not want to take any medication.

During the Thanksgiving holiday, I began experiencing daily heartburn. Then in December, I had a bout of daily diarrhea that lasted for twenty days. At this time I also began to regurgitate my meals. I do not know if what I am calling regurgitation is what others refer to as acid reflux, but basically every time I ate lunch and dinner, shortly after eating the meal I would begin to burp and my mouth would fill with undigested food which I would then have to spit out. This regurgitation would last anywhere from one to four hours after eating the meal and ranged from one to thirty ounces at a time. The rheumatologist referred me to my general practitioner when I called to report these new symptoms. My general practitioner referred me to a gastroenterologist. Also at this time, my scalp became extremely itchy and I developed small, open sores all over my chest.

The gastroenterologist did an endoscopy and a colonoscopy. Although he did not think it looked like I needed it, he also dilated my esophagus. The gastroenterologist said he did not find any physical evidence of scleroderma and the biopsies came back as normal. He started me on Prilosec for the heartburn and acid reflux/regurgitation. It did nothing. He then did a twenty-four-hour esophageal PH monitoring test, a esophageal manometry test, and a gastric emptying test. He told me that the twenty-four-hour PH monitoring test indicated that I was experiencing frequent reflux that was reaching the upper esophagus. (No kidding! I kept telling everyone it was undigested food coming all the way back into my mouth!) But each reflux did not last very long. (No kidding! It came up and I spit it out!) He said the esophageal manometry indicated some nonspecific dysmotility. Out of the ten swallows, two were a bit abnormal. But again, not enough to explain my regurgitation problem. The gastric emptying test came back normal. I was also having horrible daily headaches that I thought were a side effect of the Prilosec. So, he started me on imipramine (for the anticholinergic effects) and switched me to Ranitidine Again with no effect at all. Also, throughout the winter months, I did begin to notice that my hands turned somewhat blue and purple and white when very cold and bright red when hot when doing dishes.

I saw the rheumatologist again in May and because there was no physical evidence of scleroderma, he still diagnosed me with Undifferentiated Connective Tissue Disease. He was not able to explain the physiological mechanism responsible for my regurgitation problems, but thought it might represent a dysmotility problem. He started me on Reglan. The Reglan also did not seem to effect the regurgitation problems either. He also started me on a medication to help with the headaches I was having.

Toward the end of June, the regurgitation began to stop just as mysteriously as it started. In addition, the sores on my chest just disappeared. By August, my chest was completely cleared up and the regurgitation had stopped completely. Since the medicine never seemed to make a difference, I stopped it all at that time. Within one week, I was so stiff and sore from joint pain in my knees, wrists, and lower back, that I started the arthritis medication again.

Now it is mid October and I think everything is starting back up. My fingertips are very tender, but I haven't noticed any sores. I wake up two to four times every night with my hands in agony. They feel stiff, swollen, burning and numb. I find I have to put them on something cool and wiggle my fingers around a lot to help them feel better. When I first get up, it is painful to put any weight on my feet. My soles just feel very sensitive and my toes are sore. As the day progresses, my hands and feet feel much better. In general, I can tell the quality of the skin on my hands is changing. It just feels thicker and kind of waxy. My forehead is very itchy and feels rougher than the rest of my face. The skin on my face in general, is much pinker than it used to be. My hands are frequently cold and I have noticed more frequently, that they are blue and purple. I have also regurgitated my dinner three times in the last week.

So, these are my questions. Do these symptoms resemble the beginning symptoms for others who have gone on to be diagnosed with scleroderma? When other people talk about acid reflux, is that the same thing as I am referring to when I say regurgitation? If not, have other people experienced this regurgitation? And if so, have you found anything that helps?

I have also experienced some "cognitive slippage." I find that I have difficulty finding the right words to describe things sometimes. Is this normal aging, or have other people experienced cognitive changes with their disease? I also have frequent bouts of dizziness. This seems to be triggered by barometric pressures changes. Does this happen to anyone else? I have also noticed that when I exercise, my vision becomes blurred. Does that sound familiar? Finally, does anyone have any advice on things I can do to prevent the progression of the disease or at least slow it down, if in fact it sounds like scleroderma?

I know that regardless of what happens, I am lovingly held in the arms of a Sovereign God and that His will be done. I am thankful for the loving support of my adoring husband and my family. I know without a doubt that they will stand by and support me no matter what direction the disease may take.

To Contact the Author

Email: [email protected]
Story edited 10-12-02
Story posted 10-15-02
Heidi is now retired as ISN Manager of Sclero Forums
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Acid Reflux
Carpal Tunnel Syndrome
Difficult Diagnosis
Undifferentiated Connective Tissue Disease

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Helen: Raynaud's

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