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claude

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About claude

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  1. Doctor Wallace has been treating me for the last 20 years for lupus and he sent me to Clements who doesn't seem convince that I have scleroderma, in spite of all the symptoms, including tightness in the face, legs and arms. Thank you so much for taking the time to answer my post. Time will tell. Claude
  2. I've had lupus since 1980. In the year 2000, my lupus was in complete remission when I got bitten by a Lyme tick. My doctor affirfmed that there was no Lyme disease in Southern Ca. and that my aches and pains were related to the lupus. (He now changed his tune) It took two years before I was diagnosed with Lyme... In 2003 my tongue started swelling. I was told it was acid reflux. The skin all over my body started thickening, including my face. I got a biopsy and was told I had cutaneous scleroderma. But they cannot decide why my tongue is swelling since apparently, scleroderma does not affect the tongue (but I read that scleredema does). What kind of test should I ask for? What doctor specializes in this disease? I am watching myself get worse every day and no one is doing anything about it. I live in Los Angeles. Any advice? Thank you.
  3. Jefa, Heidi, Thank you for your warm welcome. I didn't want to overload my first post with information, but I should have mentioned that I have been diagnosed with lupus twenty years ago and that I have seen a rheumatologist ever since. In my case, I have always been able to control my symptoms with a right diet and natural anti inflammatories. In the year 2000, I was in complete remission when I developed a bull's eye rash on my leg. Since, at the time, I was surrounded by deer, I immediately thought of "Lyme disease". My rheumatologist poo-pooed the idea claiming that there is no Lyme disease in Southern California. I've gone to see a so-called "Lyme specialist" (this seems to be a controversial disease). He told me that I had Lyme disease. These two physicians agree on one thing: my swollen tongue couldn't be related to Lupus or Lyme. When I started develpong all these new symptoms (i.e. tightening of the skin, disappearing wrinkles, fibrosis under the skin) I metioned scleroderma to my rheumatologist. He insists that I don't have the disease, but doesn't know what is creating all these symptoms. He claims they are due to inflammation. I went as far as the Mayo Clinic in Rochester where, there, they ruled out Lupus, Lyme and Scleroderma. I requested a biopsy of my tongue. The result was "epithilial hyperplesia with submucosal edema" When I asked what it meant, the answer was: Swollen tongue. You can imagine my frustration. As of this morning, I have developed a couple of new symptoms. My feet are burning and I get stabbing pains in the ankles and more worrisome, I am basically unable to urinate. I wonder if the swelling is taking place inside my body also and if my kidneys are being attacked. I get so depressed not to be able to get a definite answer... Wishing everyone a good day, claude
  4. Just wondering if anyone diagnosed with scleroderma has a swollen tongue. Mine has been getting progressively larger over the last few years. At the same time, the skin on my face and legs, mostly around the ankles, has been getting thicker. Also, the wrinkles on my hands are disappearing and they look shiny when I make a fist... I had a skin biopsy in France and was told that I had an overproduction of collagen and they diagnosed me with cutaneous scleroderma. Here in the States, I've had a couple of blood tests, (Scl-70 result was 25). I was told it means I don't have scleroderma. I've gone to a couple of dermatologists who, after pinching my skin decided I didn't have scleroderma. I am not quite convinced. When asking, "if it isn't scleroderma, what is it?" I get, on a regular basis: "I don't know". I also developed heartburn and diarrhea and various pains in legs, ankles, feet and arms - and irregular heartbeat (recently). My condition has been getting worse over the last five years. Any idea? Waiting anxiously for any suggestions. Thank you. Claude (by the way, I am a fifty five year old woman, but in French Claude is a name used for both men and women...)
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