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#1 ginny


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Posted 29 January 2008 - 10:42 AM

i am a 40 year old female that has been in and out of the hospital very sick. I am just now getting some answers but they are still moving slow. the gastro dr. and the endocronologist are saying I have scleroderma. I go in this week for test results done recently, but I have been diagnosed with gastroperesis, gastritis, esophogous primary wave failure. also recently found out I have hypodensities in 3 places on my liver (ct scan) also severe reflux problems and my red and white blood cells in my urine and blood are both to high or low. my question is my legs are hurting really bad at night and when I lay down and my knees are filling with fluid but my whole legs are hurting bad and this just started. my left arm is also hurting but I was told I had rsd in that arm so I am not sure about that. could there be any danger in my symptoms? I have been through the mill with this and I think I am making some headway but I am getting sicker by the day and I am a strong person but I really feel bad. I been in and out of the hospital infact I was in 2 weeks ago and that is when they started suspecting the scleroderma. I can't eat it hurts so bad and I have to have fluids and pain control. anyone have any ideas? I have mad a very long story short and am wondering if complications can come on suddenly? and if they can be life threatening. Thankyou so much Ginny

#2 Sam


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Posted 29 January 2008 - 01:21 PM

Ginny I am sorry to hear wha tis going on with you. It seems like they are on the right track of finding out if you have sclero or not. There are alot of good information on here about scleroderma. Take care, and let us know what is going on. Take care, Sam

#3 janey


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Posted 29 January 2008 - 02:00 PM

I so sorry to read about all the problems you are having. It does sounds like your GI and endo doctor are trying to get some answers; however, if you do have scleroderma or are suspected of having it, you really should be referred to a rheumatologist in the very least, but preferably, a scleroderma specialist. If there isn't a specialist in your area, then try to find a rheumatologist that has treated scleroderma patients. Autoimmune diseases, such as sclero, are a rheumatologists' special training, so please make an appointment with one as soon as possible. Here is a link to our page of scleroderma specialist. This page also provides a link to finding rheumatologists in your area.

Please keep us up on how you are doing. We welcome you and am glad you have sort out additional help and support.

Big Hugs,

Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 susie54


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Posted 30 January 2008 - 02:00 AM

Hi Ginny,

You have alot going on and I am sure you are wheeling from all of this. My MCTD came on very suddenly when I was 45. Everyone is different but mine came on with pain everywhere in my body and numbness that traveled everywhere. I have fluid on my knees every once in awhile. It just comes on but I hate the pain in the legs that the fluid can cause. Try and elevate your legs as much as possible and eat a low sodium diet. Eat healthy and rest alot. I think seeing a specialist in scleroderma would benefit you but at least a rheumatologist. I hope things calm down for you soon. Susie54

#5 jefa


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Posted 31 January 2008 - 11:57 AM

Hi, ginny. So sorry to hear about your problems, but I am glad you found us. Janey and the others have given you good advice, but I thought you might also like to look at our page on Emotional Adjustment which may give you some support in dealing with these new problems. Please read other threads and feel free to ask any questions you may have. Hugs to you.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)