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About ginny

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  1. i am going back into the gastro dr. in 2 weeks and was wondering if they can actually biopsy and specifically check for sclerodoma and how it is done so I can talk to them about this. also if they can't do that is there other things they can biopsy to check specifically for sclerodoma. another question is outside of all my gastro and bladder and rsd problems (the list goes on) raynouds etc. i just started really suffering with leg pain to the point is is waking me up. it started just in my knees now my legs are waking me up and it is hurting to walk and just in the last few days my ankles are hurting and it feels like deep bone pain. does anyone have any ideas? should I be worried? what could this be? also my hands are swelling really bad at night. thankyou to anyone who might be able to help me. look forward to hearing from you and I read all about your problems and I wish you all well I know you are going through so much like me my heart goes out to you. thankyou again ginny
  2. i am new to this forum and am very interested in going to the john hopkins sclerodoma center. where is it? what have they done for you? i am only 40 and my life is turned upside down I need help so bad. to make a long story short I have interstitial cystitis, gastroperesis, gastritis, esophogus motililty problems, rsd in the arm and I hurt so bad I am stiff like cement then my knees started filling with fluid and recently my legs started hurting really really bad they are waking me up at night. the other stuff has been a nightmare and scary but I have been battling that for awhile but the leg pain is new do you have any thoughts as to what could be causing this? it is getting worse and worse and scaring me. even if I had an idea as to what it could be would be great I cannot understand why this set in so fast and is getting worse so fast I guess I am really scared I am sorry to unload on you I guess I am desperate for help. if you could tell me where this is I would make an appointment as soon as possible. if you have time I would love to hear a little of what you have been through. thankyou so so much ginny and I look forward to hearing from you.
  3. i also live in colorado and I am thinking of moving to nevada. i have heard lower altitude can really help is this true? i feel awful as you know you have been so nice to me. what have you heard on lower altitude? also do you know anyone else out there with interstitial cystitis that are having horrible autoimmune symtoms? also I am scared over something, my legs started really hurting lately even to walk but really really bad at night and I cannot understand why. what do you thing this could be a sign of? they seem to be getting worse really fast. thankyou so much look forward to hearing from you soon. take care. ginny
  4. tangelo I was told you might be able to help me. i am having horrible problems and am searching for a dr. that deals with sclerodoma or other rare autoimmune diseases here in colorado. i am getting sicker and sicker with stomach esophogus bladder leg pain fluid on the knees raynouds the list goes on and on and I am only 40 years old. if you think you could help me I could give you more details about my health but 2 doctors have brought up the crest syndrome or diffuse systemic sclerosis I am at a loss in and out of the hospital I hurt so bad and cannot hold down food. i am really getting scared and I can't find help. if you could point me in the right direction I would be so greatful. I am even willing to travel I hear some of the rare disease clinics or hospital may help but I am not sure where to turn to. I also have a little sister (32) who is going through almost the exact same thing. with both have ptosis of the eyes and think that may have something to do with it. well I mad a real long story short and if you feel like writing me I sure would appreciate any help you could give me. Thankyou so much Ginny take care and thankyou again
  5. hi pamela and thankyou so much. not much in denver I see. i have been going to the national jewish hospital but I am seeing a young dr who is new and not much help yet but hoping. i am gonna call the other ones and see. she ran one panel of test and set another appointment for the end of feb and doesn't seem to say much so I don't know? i heard they can biopsy organs to check for sclerodoma and autoimmune problems. do you think if I get into a sclerodoma dr they would set that up? no dr. has even said it could be done and I know they would find it that way. i am just scared because I am getting worse so fast. the leg pain is coming on so fast and my stomach hasn't stopped hurting in months I am having too many problems and even with the diagnosis I have got they are still just moving so slow. you'd think with all the diagnosis they would care and they just don't. i just want to thank you so much for the help and I look forward to hearing from you. if you know of a clinic that could help me and I mean really help me I am open for suggestions. I have heard some of these specialty clinics have really helped people and I think I may have to resort to that soon. take care and thanks Ginny
  6. Hi Lisa THANKYOU SO MUCH! i will call monday morning I appreciate this so much and any information you have would be of much help. how did you get involved in all this? I plan on helping more as soon as I get a grip on my health I am starting to take this very seriously and attacking back. THANKYOU AGAIN Ginny
  7. HI Emmie! how are you? hope all is well. Thanks for the advice it is appreciated more then you know (you probably do know!!!!) if you want to tell me some of your experiences I'd love to hear. anything you hear my ears are open. Thanks again and you take care of yourself. I look forward to hearing from you!!!! always smile sometimes it helps! Ginny
  8. hi there peanut! how are you? thankyou so much it feels wonderful to have someone actually listen talk about a hard time my goodness I would never believe what you go through when you are sick unless it happened to me and now I feel so bad for other people I plan on helping as much as I can. what happened to you? (if you want to tell me). you guys have all given me hope again I hate so much being so sick I am really a fun happy person. anyway I am going to call on some of the doctors given to me I thought they could biopsy for a diagnosis it made sense but you would think the dr. would let you know this or at least refer you to someone who might know. THANKYOU AGAIN look forward to hearing from you again. TAKE CARE and SMILE! your worth it!
  9. thanks to all your replies I really appreciate it so much. i got some blood test results back and it did not suggest scleroderma but they still suspect it but basically said they just cannot help me. does anyone know of a scleroderma specialist in Colorado? do you think it would be that much better then a rhuematologist? also is there just one set of test they do to determine this? because that is what they are saying. i am so upset with this I cannot find help and I do not know what to do. any help would be greatly appreciated. i really fit the description. are there any test for the digestive tract that can determine this? biopsy's etc.? THANK YOU SO MUCH
  10. 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
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