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Swollen Tongue


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#1 claude

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Posted 14 May 2007 - 04:58 PM

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...)

#2 jefa

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Posted 14 May 2007 - 09:03 PM

Welcome to the Forums, Claude. I am glad you found this very informative and supportive group to share your questions with. I am not a medical expert, but it certainly sounds as if some of your systems might be manifestations of scleroderma. Low or negative ANA results do not rule out scleroderma. I would try to see a rheumatologist rather than a dermatologist with your clinical symptoms. As for the tongue growing steadily larger, is it possible that your mouth is growing smaller? Here is a link on mouth involvement in scleroderma which may have some answers for you.
Warm wishes,
Jefa

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#3 Heidi

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Posted 15 May 2007 - 02:05 AM

Hi Claude,

Welcome to the forums! I am glad you found us and posted your first message, but sorry it is because of your symptoms. As Jefa told you, an ANA is supposed to be used as just one marker/indicator of scleroderma and used in conjunction with one's clinicall symptoms in making a diagnosis. Also as Jefa suggested, you may want to see a rheumatologist and one specializing in scleroderma would be the best.

It is interesting that you mention your tongue swelling....mine has felt like it is swollen (especially in the mornings) for about 3-4 months now....to the point that I sometimes feel as if I am slurring my speech. I wasn't sure if it was actually swollen, or if it was due to dry mouth, or what. So many possibilities.....

Again, welcome! I do hope you will come here and post often and let us know if you are able to see a specialist and what they say.

Warm wishes,
Heidi



#4 claude

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Posted 15 May 2007 - 04:07 AM

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

#5 WestCoast1

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Posted 15 May 2007 - 04:19 AM

Caude,
What you are going through right now sounds very hard. Not getting answers that are "concrete" can also be tough. Somtimes these symptoms have to apear before an Autoimmune diagnosis can be given. They can mimic eachother so once one symptom dominates the doctor can then start putting together the pieces to get a correct diagnosis. Also staying with one doctor, (if you trust and respect his/her oppinion), helps so that they can see your progression.

I think that it would be a good idea to let the doctor know about the trouble you are having with urination! Please take care and let us know how you are doing.
*WestCoast*

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#6 Sweet

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Posted 15 May 2007 - 05:04 AM

Hi Claude,

I wanted to welcome you to the sclero forums. I'm sorry you are dealing with all of this. I see the others have provided you with some great links so I hope you'll have the time to check them out and find them helpful.

Hang in there and know we are here for you!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)