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About kselibrary76

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    Bronze Member

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  • Location
    NW Chicago burbs
  1. Well ladies and gents. I'm back. I suffer from vulvar and rectal lichen sclerosis (scarring of the vulva and rectum) Now we're talking fun (not). I consider myself an expert on panty advice. :) I have to deal with some issues in that...erm, realm so here we go. 1. Only and always cotton. Not a nylon or silk WITH cotton crotch, ONLY cotton. 2. Only panties with NO elastic in the legs. Yes, they are out there. Resort to boy shorts if you must, or go without. 3. Speaking of going without, try only skirts. Pants are killer and make too much heat. A little air is good for
  2. Oh, I'm pleased, VERY pleased, with the no sclero diagnosis. I just thought it was a bit odd to not have any other blood tests, etc. done. I'm on the road to discovery, as I like to think of it. I AM going to discover why I feel so bad and have so much bone pain in my extremities. We made a decision last night. The sclero specialist wanted me to see an endocrin metabolisism doctor at the clinic she is at. My appt is not until October. Well.....I did some research last night and there are literally a dozen doctors of that set in the surrounding area, that my insurance covers as well.
  3. I feel exactly the same ... kind of like the appt when all willy nilly when she decided I was all clear. My fiance feels differently, but then he isn't feeling what I'm feeling inside. I hurt...everywhere, and just feel sick. We were told it could be due to the fatty liver low VitD combo, and gastritis and fatty liver. Uhm. Sure it could. I hope you find answers soon, sweet one. Enough is enough and too much is nasty. See my thread about my trip to the sclero clinic. I truly want the input of those who are not doctors but are there fighting in the trenches.
  4. Well, here we go. I just read the 'dismissed' thread and feel a little at sea myself. I went to see the Sclero specialist on Monday. With me I took a list of things: Medical history Family medical history Current concerns Fears Questions Jim (fiance and sweetheart of a man) The doctor came in and talked to me about why I was there. She looked at my abdominal ultrasound results, blood results (question for you all...is a hiatal hernia in anyway related to what you guys are saying is GERD? My endoscopy showed small hiatal hernia and inflammation in the stomach and small
  5. Thank you Shelley and Amanda. Thank you too for the links. I just got called with the biopsy results of my esophogeal, stomach and small intestine biopsies. No inflammation of abnormal cells found in the esophagus. Nothing abnormal at all except for a slight hiatal hernia. Inflammation in belly and small intestine was shown to be of normal pathology...minor inflammation. No abnormal cells were found. I need to know what is causing this all over body pain. It is frightening in that it remains as it has. I freak out about a lot of things (admitted control freak here). My
  6. Thanks Shelley, The test yesterday went well. The G.I. saw no scarring, no thickening, no hardening. He did some biopsies of my esophagus anyway, as well as my stomach and small intestine, just in case there were underlying issues. He feels I have gastritis and perhaps a good case of h. pylori, which I've had in the past. He didn't feel I had any sclero damage. That, with the results of my abdomenal scans, make me feel a bit more...able to face whatever. The doctors all feel there is some sort of connective tissue thing going on. My shins were radiating pain all last night (n
  7. I'm Karen, 53 years old. Morphea on back Vulvar and anal Lichen Sclerosis IBS of late I have had a lot of muscle pain and tendon pain, burping, hiccups and fatigue, toss in newly discovered fatty liver, and off to the doctor I go for bloodwork. Came back that I was VitD low and ANA 1:640 centromere pattern. My physician became concerned, which in turn freaked me out. I'm still freaked out! He sent me for several more tests, one was an ultrasound of my abdomen. I had a lot of abdomenal ache. Turns out (we think more than likely) caused by fatty liver. I am now no carb'
  8. Marsha, Just know that me, a newbie is watching your struggle and fight. I admire your plunk and ability to keep on keeping on. Learning lots too. Karen
  9. I'm very new to this group, but want to tell you that to love and be loved is the greatest gift in the world. That you have family that care for you...you always have a place in their hearts, now and forever.
  10. So, Amanda...how did they come to your diagnosis and do you know if your morphea can skew the bloodwork to show the centromere pattern? I'm so lost and so new. :( Did you have other symptoms? What were they if you did? I'm dreading all of this greatly. Other than fatigue and muscle/bone ache...I feel pretty good!
  11. The only other symptoms I'm FEELING is muscle fatigue and bone ache, but I was very VitD low. It has improved greatly as I have begun taking VitD. We'll have to see what my scans show. As for the specialist I am going to see the rheumatologist my general practitioner suggested (not until August 10). I just found, however, that the city of Chicago has specialists there and am thinking I may go ahead and make an appointment there as it takes a very long time to get into them, I am sure. I'll be calling today.
  12. You inspire me. I like your pro-active approach. I've been in the valley of sad so long, I'm going to try to claw my way out of it...reading about people who stay the course and look at all the options make me feel stronger about all this. Thank you!
  13. I was diagnosed (via biopsy) with Morphea about 5 years ago. We went on vacation to Providenciales and I came home with 21 white plaques about the size of a quarter. I was sent to a rheumatologist who sent me to an immunodermatologist. We decided to go with kenalog injections into each lesion. This took 5 trips, and the lesions began to burn out. One then showed up on my breast. This one burned out on its own within 2 years. I have heard that it is quite rare to have localized sclero and systemic. Is this so? The reason I ask is this...I recently went in to see my ge
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