An Invisible Disease

After being diagnosed with Lupus Erythematosus in 1995 I have learned that there are many invisible diseases. I’ve done some reading and talking to other people about these diseases has fascinated me. I’d never heard of most of them. SLE was one I had not heard anything about until the day I was diagnosed.

Most of us has had some small symptom that I would relate over work, stress, not enough sleep, tired for no apparent reason. I know many times I would have aches and pains and shrug it off, generally thinking overwork, maybe lifting to much, not sleeping well, the list goes on. I think I’ve had about 4-5 headaches in my entire life. When I would get one it would last for several months. I’d had skin rashes, never lasting more than a week or two. I would also get a butterfly rash on the face.

I had trouble breathing at times, pain around my lungs and ribcage. There were patches on my skin that was totally devoid of any sensation. There were places that felt like a burn with the slightest touch. For about one week a water drop felt like fire on my skin. My hands and feet would be freezing at 80 degrees. I would lose my balance all at once, and then just as fast the problem was gone. I had pains in my neck and back that would actually put me on my knees. I spent about a year barely able walk, if I bent down it may take 15 minutes to get up. I never quit working until late 1999. Normally I could lift a hundred pounds, but had days I could barely lift 20.

In my search to find a Dr that didn’t think I was nuts, I finally found a dermatologist quite by accident. I had a stepson that had warts on his hands and had to have them removed. At the time I had some rashes that was driving me nuts when I would get in the sun. So I made an appointment with Dr Allan Rubin in Wheeling, West Virginia. Within 5 minutes talking with him, he told me he was 99% sure I had Systemic Lupus Erythematosus, after explaining the symptoms I had. So to be sure he took a biopsy of a skin lesion on my right arm. He asked the nurse to draw blood. After about 2 weeks he personally called me and confirmed the SLE diagnosis. In the meantime I came down with pneumonia. For someone that hadn’t been to a Dr for anything, having rarely had a cold, it seemed I was falling apart.

The doctors I saw while trying to figure out what was wrong, acted like I was nuts. That wasn’t hard to figure out. I know for a fact there are very few doctors that understand SLE. I’ve met a couple that has the concept that if no one in the family had then I didn’t. It’s been known that SLE is not hereditary for quite sometime. I went a doctor in Carollwood, Florida that The Lupus Foundation lists in their recommended rhuematologists, which totally had no clue. When I told him that I had been diagnosed with SLE, he told me that men don’t get it, only in rare instances.

This is the kind of ignorance you run into. He made this statement without ever examining me.

Cost Of Treatment Plays A Role

There are probably thousands of people with SLE that won’t get diagnosed in many cases because of doctor ignorance. It takes time, patience and knowledge of the disease. With the cost of medical treatment today, it makes it difficult for many. Many HMO’s simply will not pay for aggressive treatment and testing. Medicaid and Medicare limit most testing and treatment. As you know, HMO’s won’t allow you to go qualified doctors if they aren’t on their lists.

Please Read!

This site will be constantly updated. The information on this site is not meant to take the place of a doctors advice. This information should be used as a guide and to try to understand Lupus. Very few people will have the same exact symptoms, this is simply a guideline of what I have experienced. The things on this site are from my own experience and research I've done.