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i am just very frustrated. my doctor is saying that all my tests are coming back normal. so, i guess theres nothing wrong with me and my imagination ha crated my hand problems, migraines, gerd, arthritis, digestive issues and fatigue. why arent doctors curious and caring enough to want relief for their patients. my doctor moves so fast. and when she tlks she sounds like google.com
Arthritis GERD Thrush Diffuse scleroderma Physical therapy Lupus Scleroderma Fibromyalgia Osteoarthritis
go to another doctor. My labs are all negative too and my skin biopsy was inconclusive - but my primary is sending me to a rheumy since I have swelling/tightness in the hands and fatigue along with other issues. just this past week I have gotten these nodule looking things on the inside joints of 2 fingers and thrush- pretty sure there is something going on- my point is you know your body and you know when something isnt right. Dont settle!
My tests were negative in the beginning but it was obvious something was drastically wrong. I had had numerous biopsies taken from different parts of my body but everything was very vague. Eventually after time in hospital and many other tests they decided in the beginning that I had Mixed Connective Disease with Osteoarthritis at that point. The Scleroderma came later with the other things.
Don't despair...there is obviously something wrong and don't for a minute think it is in your head...persevere you will get answers. Liz
Find another doctor who knows the disease. My labs were never positive and I most certainly had diffuse scleroderma. Stay proactive and assertive until you get answers that make sense to you. Good luck and hang in there. The diagnostic process is a roller coaster. Once you have a good medical team you will feel much better.
Sometimes test don't show the whole picture; it's a hit and miss until something shows up. Don't give up! It took many years for me to find out what was wrong. To be truthful, you need a better Doctor, one who will talk to you so you can understand what they are doing for you or can do for you. It's important to follow through, many of your symptoms are classic scleroderma conditions! Research your symtoms; keep a diary of what's happening; review it with your doctor. Ask to be tested again...or try a different test.
Keep working it...best of luck!
Cyndi
Thank all of you. I kind of went on a slight rant there :) I get so upset because I feel so bad most days. I go to the doctor and because my tests are negative they dismiss me. One appointment they're saying that there is no inflammation showing in my tests.....then tell me I have arthritis! My aunt has scleroderma and we both have almost the same symptoms. I would be able to exhale if I had validation from my doctor for what I am going through. Ive been through 3 doctors. One said I had some type of autoimmune disease, the next said lupus then fibromyalgia, now this doctor is saying osteoarthritis. What about all the other symptoms? You all give me some kind of hope thank you.
If you would consider the option of antibiotic therapy, you might find a doctor who would recognize all of your symptoms for what they are. If you would like to find an ap doctor, you can check the roadback.org site for a rheumatologist who does ap treatment in your area. The way they examine and treat both arthritis and scleroderma, they are more in tune with the symptoms you have. It is not uncommon for them to recognize more than one autoimmune disease such as lupus and scleroderma in one patient. You may have two things going on, not just one.
Best wishes, and good luck.
I will do that. My PCP is refusing to give me a referral to a rheumy claiming that because it is not rheumatioid arthritis that they would prefer to do physical therapy???? So, now I have to start from scratch with a new PCP. Does anyone know of a rheumy in Colorado Springs that I can see without a referral? Before I cry myself crazy. I can't get a doctor to just care!!!!!
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