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Gordon: Difficult Diagnosis

I have had mysterious ailments for the last five or six years with never any medical explanations.

Agapanthus by Sherrill Knaggs, ISN Artist I am a forty-year-old male and I am quite certain I have scleroderma even though I have not yet been diagnosed. I am telling my story in the hopes that in some small way it might help bring understanding of the disease and hopefully a cure someday! I am also telling my story because I would like medical professionals to be more open-minded regarding the possibility of autoimmune diseases like scleroderma in patients who are difficult to diagnose.

Nearly one year ago (it is March 2002 now), I became very ill with the flu and that seemed to serve as a trigger for the disease in me. I had a terrible flu with high fever, vomiting and severe diarrhea. I was so dehydrated by the time I was done with the flu, it took me a week before I was not thirsty anymore. It was during this time that something in my body got triggered.

The first thing I noticed was that my skin acted differently. Or perhaps a more accurate statement is to say something underneath the skin had changed. The skin blushed more than normal after applying finger pressure to it. It also dented in more than normal. My wedding ring and my socks began leaving slight impressions in my skin. When I awoke in the morning I had little wrinkles all over my body where I had been laying on the bedding. It was a subtle difference that others did not notice but I noticed it.

My physician performed extensive blood tests at this time but all my results were normal. At one point he suspected that some type of endocrine problem could be to blame for the skin change, but after seeing an endocrinologist and having a full work-up, everything was again normal. Several months after noting this difference in my skin, I quizzed my physician about it. He told me one of the possible causes could be vasoconstriction of blood vessels due to connective tissue disease.He was just theorizing when he said this but now I believe he was absolutely correct. My skin is still like this now it appears to be a permanent change. And based upon my other symptoms which I will cover momentarily, I believe this change is not confined to my skin but is, in fact, affecting blood vessels throughout my body.

At the same time as the skin change, I also began experiencing bowel problems. I had constant floating stools and intermittent severe diarrhea accompanied by bloating. I went through pretty extensive testing to find a gastrointestinal cause for my digestive problems, but all tests were normal and we never found a cause although many diseases were ruled out. I believe now that the reason for the diarrhea and floating stools was due to bacterial overgrowth in my intestine due to spasms of my digestive tract. There are several compelling reasons why I arrived at this conclusion but I don't want to bother with all the details here.

In the months immediately following my flu, I also experienced several other bothersome symptoms besides the skin change and the digestive problems. I suffered from several months of moderate to severe fatigue. I also had a lot of strange muscle aches, cramps and spasms. My hands were numb quite often. And I had some funny burning sensations from time to time in my arms and legs. Again, my doctor performed more medical tests but they were all normal of course! By early Fall 2001, many of these odd symptoms started getting better and I started actually feeling better, but the digestive problems and the skin change persisted.

Then, in early November of last year, new symptoms presented themselves. My hands and feet started getting cold really cold! Very soon after I became cold all over. I had always been a pretty warm-blooded person but I suddenly found the need to keep the thermostat set at 75 degrees in order to stay comfortable. Instead of wearing thin cotton shirts like I always had, I began wearing heavy sweaters. I also found it necessary to buy heavy wool socks and to wear mittens and a stocking cap outside even when it was not that cold.

The circulation to my feet was so bad that it became uncomfortable to stand upon them for more than a few minutes and I noticed the bottoms of them would commonly be a dusky-blue color. My doctor informed me that I was probably suffering fromRaynauds. Another strange thing that occurred at this time was that I started having periods of time where I urinated excessively, leaving me thirsty. These periods of time would range from a few hours to a few days. Many times, the periods would start at the exact same time as a flare of coldness in my hands so I believe the cause for this urination symptom is vascular-related. It was as if my kidneys were not able to absorb water properly.

Also, about the same time as I developed the coldness, I noticed that my heart started to do funny things. My heart rate seemed to be more elevated. At times it would be beating so fast and hard so as to be annoying. I also seemed to have more of those funny skipped heart beats. A Holter monitor test was done on my heart but the results fell within normal limits even though I could tell that my heart was not acting normally for me.

Despite my new-found cynicism regarding the value of medical testing, I decided to go to a distinguished medical facility early in the new year of 2002. So I took my stack of medical records with me along with my collection of bizarre symptoms and presented it to the doctors. After a week of testing, the only diagnosis I received was severe Raynauds in my hands and feet. It was actually classified as severe atypical Raynauds because I did not have any color change but the doctors were able to measure the reduced blood flow to my hands and feet through vascular testing.

By this time, I had done a lot of my own research via the Internet and I was quite convinced that I had scleroderma. I presented my concern while at the facility and I was told I did not have scleroderma. Two rheumatologists at the facility told me I could not have scleroderma because I had no skin involvement and I had a negative ANA test. (Incidentally, it does not take too much research to find that you can, in fact, have scleroderma with a negative ANA and with no skin involvement.) So I returned home with really no explanation for all my symptoms and yet I was still convinced I had scleroderma.

Shortly thereafter, I saw my local rheumatologist and confided in him that I really felt I had scleroderma. He reviewed my medical testing, looked at my fingernails, and said I did not have it, although he acknowledged that many of my symptoms did fit with the disease! (I am keeping track: that is three rheumatologists now who have told me I do not have the disease! If only my health could be dictated by what the experts say I'd be in great shape! )

About a month or two ago I developed the next symptom, esophageal spasms. It started as an uncomfortable pressure under my sternum and quickly migrated further up into my throat. My swallowing has not been affected by this problem, but my throat is uncomfortable much of the time. This was sort of the crowning blow as far as I was concerned there were simply too many symptoms now that corresponded with scleroderma for it not to be scleroderma! I have reviewed all of this information with my local family physician who agrees that scleroderma is probable although there are no objective tests so far that prove it. Nearly all doctors I have spoken to so far have said that even if I do turn out to have scleroderma, they would do nothing for me anyway other than to monitor symptoms. In researching this disease and talking to other people who have scleroderma, however, I do not believe this it totally accurate! So, my next step will be to meet with a scleroderma expert not just a rheumatologist but a scleroderma expert!

Even though I said my story started one year ago I think it actually goes back much further than that. I have had mysterious ailments for the last five or six years with never any medical explanations. I had a several-month period of unexplained fatigue and acid reflux several years ago. The fatigue was severe and debilitating to the point that I had to rearrange my work schedule. And the reflux was constant, twenty-four hours a day. It did not matter what I ate or did not eat I had reflux. Then more recently, I had a period of time where my stomach quit emptying properly and I was unable to eat very much and therefore lost some weight. And I had other digestive problems from time to time too but these things always went away and I got better so I never worried about them too much. But now, I believe all of these other things were related to scleroderma.

So, that is where I am as of March, 2002. I am convinced I have scleroderma not because of what the doctors say and not because of what the tests say but because of how I feel and from what I have read about the disease. I have never been so uncertain of my future as I am now. I hope a cure for this disease is found. I hope whoever reads this story will find it in their hearts to make a donation to help find that cure. Incredible progress has been made towards many other diseases such as cancer and AIDS yet little progress has been made towards scleroderma. For now though, I will try to live my life as best I can. I will try to learn what lessons I can from this disease. I will try not to let fear get the best of me. I will remember what is important in life. And I will draw closer to my God.

Thank you for reading my story. I would appreciate speaking to other people who have gone through similar experiences. If you send an e-mail please put scleroderma somewhere in the subject line so I do not delete your message.

To Contact the Author

Email: [email protected]
(Please put "scleroderma" in subject line)
Story submitted 3-29-02
Story posted 4-18-02

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Acid Reflux

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!

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