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Old 04-11-2001, 09:12 PM   #1
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Join Date: Feb 2001
Location: McMinnville, OR USA
Posts: 14
Oregongirl HB User
Exclamation Now diagnosis is "Scleroderma"

Well, it isn't "Non-Hodgkins Lymphoma", nor is it "Lupus", nor is it an enlarged spleen, ("Spleneglamy") My Rheumotologist called my Dr. and told him to do a biopsy on the two masses immediately. My Dr. did a punch biopsy on both. They came back benign, but it took a lot of talking on mine and my husband's part to get the Dr. to say that they came back benign. What also worries me, is that fact that my Dr. said we cant' rule out cancer yet. I have "Scleroderma" and it depends on what kind I have, and that it can spread to my internal organs. ( I am now having pain in my throat, and deep inside my back), He also told me I was to see a Dermatologist right away. I am still waiting for an appointment, meanwhile I am getting more sick. I still have an ongoing fever of 100, my sed rate is probably 100 by now, since it was 85 2 months ago. My white blood count keeps getting higher, but they dont give me anything for it, no antibiotics or anything. The two masses of growths on my body are huge, brown and shiny. I took out my own stitches yesterday. I can't even get my Dr., or his office to call me back half the time, I figured I'd save time.
I am going to OHSU soon, I think I will be in good hands up there. THEY will help and treat me. I am worried I may have to lose my left breast where the mass is. It's pretty much more than half of it. This whole thing has been hard to deal with. I have been mis-diagnosed so many times for 3 years now.
I am still sick. They were actually going to remove my spleen last summer, thinking I had Spleneglamy. (Enlarged Spleen)
I do have an enlarged spleen, but they need to find out why, not just remove it.
I am venting majorly here.
Take care all of you !
And Peace !
OregonGirl

 
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Old 04-12-2001, 02:09 PM   #2
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Join Date: Mar 2001
Location: MN
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HalleyJ HB User
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Hi Oregongirl. Sounds like you have been through alot. The waiting and worrying is awful, isn't it. I think you are right about some doctors. Keep pushing them to take care of you. Prayers I've been trying for a year now to find out why I have pain upper left back and left rib area. I've been to my doctor, chiropractor, spine specialist. So far no answers. Kind of worried today. Was searching the net and found pancreas problems can cause back pain. Guess I'm back to my doctor after Easter. Leaving town tomorrow, so I have to put off until then. I guess it has been going on for a year now and a few more days won't matter that much. Take care

 
Old 04-21-2001, 12:44 AM   #3
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Join Date: Feb 2001
Location: McMinnville, OR USA
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Thanks Halley, and I just hope you were able to get help as well. My prayers are with you too. I wanted to tell you that I too, have a great pain in my back and ribs on the left side. However, my morphea site is right near there too, so that may be what the pain is from. All the dr.'s and specialists I have seen recently say the same thing: Morphea does not turn systemic. "Statistically", it is systemic, and then turns to morphea. Well, I think if the morphea is left untreated (no medications what so ever except pain meds), for 3 years, and has grown, and darkened in color, and my symptoms have made me feel like a 90 year old woman, instead of a 34 year old one, I think that under those circumstances, it can, and has turned sytemic. I can feel the infection type feeling in my body and I am afraid I am dying. I am trying to be positive, but its hard knowing that I am the only one having these symptoms for all this time,and have not had any medicine to stop it from spreading further into my tissues, and for the intense pain it is causing.
My rheum. appointment isn't until next friday. I am feeling more sick each day, and very very weak. My sites of hardening skin are spreading to my hands and feet and behing my right leg. I have a fever all the time now of 100 degrees. I feel awful. Thank you for the prayers, I really really need all that I can get. I am so scared. I am thinking of paging the rheumotol. and telling him about these symptoms, maybe he can get me some medicines to help, or hospitalize me.
Peace, and prayers to you all scleroderma/autoimmune diseases~
KarenA

 
Old 04-21-2001, 12:46 AM   #4
Junior Member
 
Join Date: Feb 2001
Location: McMinnville, OR USA
Posts: 14
Oregongirl HB User
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Thanks Halley, and I just hope you were able to get help as well. My prayers are with you too. I wanted to tell you that I too, have a great pain in my back and ribs on the left side. However, my morphea site is right near there too, so that may be what the pain is from. All the dr.'s and specialists I have seen recently say the same thing: Morphea does not turn systemic. "Statistically", it is systemic, and then turns to morphea. Well, I think if the morphea is left untreated (no medications what so ever except pain meds), for 3 years, and has grown, and darkened in color, and my symptoms have made me feel like a 90 year old woman, instead of a 34 year old one, I think that under those circumstances, it can, and has turned sytemic. I can feel the infection type feeling in my body and I am afraid I am dying. I am trying to be positive, but its hard knowing that I am the only one having these symptoms for all this time,and have not had any medicine to stop it from spreading further into my tissues, and for the intense pain it is causing.
My rheum. appointment isn't until next friday. I am feeling more sick each day, and very very weak. My sites of hardening skin are spreading to my hands and feet and behing my right leg. I have a fever all the time now of 100 degrees. I feel awful. Thank you for the prayers, I really really need all that I can get. I am so scared. I am thinking of paging the rheumotol. and telling him about these symptoms, maybe he can get me some medicines to help, or hospitalize me.
Peace, and prayers to you all suffering from: scleroderma/autoimmune diseases~
KarenA

 
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