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About kselibrary76

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    Bronze Member

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    NW Chicago burbs
  1. kselibrary76


    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 you. 4. Wash the underwear in clothes soap made for babies and skip fabric softener. Use a little apple cider vinegar as your rinse agent. 5. Wash YOURSELF with non soap products. 6. If you are still menstruating, do not use pads with additives or bleach in them. Buy non bleached products. I hope this helps, any or all of you having issues of this sort. P.S. If you have trouble finding non-soap products or non-bleached pads, you may PM me for brand or store suggestions.
  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. I will keep the appointment with the one she (sclero doctor) wanted me to see, but...in the meantime, today I am calling for an appointment with one in my area. Why wait. If nothing else I can be getting the tests done I need done to feel better. I wish you all a lovely weekend. One in which an unexpected happiness of three waits just around the corner. Karen who will likely still come here to check on you all. :)
  3. kselibrary76

    I feel dismissed ... and need advice

    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 intestine indicative of gastritis - no abnormal cells were found). She talked to me of my burping (lots of it), and says that is part of the gastritis, keep on the pepcid and to see the gastro. She looked at my hands for a long time, putting oil on the cuticles and looking with one of those lighted things they look very closely into your eyes with. She said they looked perfect. She did some pinching of the skin just above the middle knuckle of my finger, palms, fingertips. She looked between my fingers. Had me squeeze her hand as hard as I could. Also checked muscles in legs and arms for strength. She pulled my lip down and the upper one up. I am 53, non-smoker, but have some very nice lines in my upper lip which has always been thin. She asked me if I had always had that small of an upper lip. I said yes (freaking myself out afterward to the point of getting old photos out to reaffirm that in my own noggin.) She asked me if I felt the skin tightening around my mouth, my answer "no." She informed me that she didn't think I had sclero. She didn't say I didn't I noticed, but that she didn't think I did. I asked about the Raynauds and she said if everyone who had Raynauds had sclero her practice would runneth over. I asked about belly discomfort and bone/mucle pain. She kind of nonchalantly said the belly is due to the gastritis and the muscle/bone pain is likely a combination of very low Vit D and some sort of thing going on with a thyroid and bone issue. Referred me to an endocrinology bone specialist (who knew they even existed) who I was told could see me in DECEMBER! I have since been moved up (if you can call it that) to October. When I asked about the centromere pattern and the ana of 1:640 she said the following (paraphrased): That basically the 1:640 is indicative that something is going on (see endocrinologist stuff above, lol) and that the centromere pattern was read by some guy in a lab that had to come up with something...and that sometimes they get it wrong. My thought was, let's do it again then to see if we get the same thing. She thought it was fine 'as is.' She informed me I was likely the healthiest person she'd see all day, get to the endocrinologist, and have a good day. She did send me for some sort of muscle bloodwork to check for inflammation there. So I am talking to a new friend that I met on one of these sclero boards about all this...she informed me she pulled down my lip to look for telangiectasia. STUPIDLY on my part, Madam Control Freak went to the mirror, pulled down her bottom lip and sees two little marks. One red and small the size of a pin , one looks more like a canker sore but there is no pain associated with canker sores. They are further down inside my bottom lip, near where it connects to the gumline. I have very few telangiectasia, maybe 15? They've been on the trunk of my body, one on an arm, a couple on legs. She didn't see the ones on my body or look at my rosacea, which I understand is a form of telangiectasia as well. So dear hearts...there is my story. I feel MISERABLE. I feel nauseated a lot (she said due to the belly issue and Vit D deficiency?), I have less bone pain as I've upped my VitD to 5000 units per day, but it is still there. I have huge muscle fatigue in the (ahem) saddle bag area. I've lost 8 pounds in the past 4 weeks for the fatty liver, with a goal of 30-40 in the year. What do you think? Shouldn't she have run another ANA or anything?
  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 father and grandfather died of cirrhosis and I know it causes you to itch, and to have pain in your legs. This pain is leg predominant with NO redness or edema. I do have fatty liver but have made great strides in getting rid of that. Diet, exercise...doc says it is totally reversible. I will also admit I itch more when I freak out and think about it too much. My immunodermatologist feels it is due to the morphea. Who knows. I am looking forward to Monday's appointment. I need some answers. Do you guys know how much I appreciate you and your input. It is invaluable. So far....so good. Big hugs all around, Karen
  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 (no sleep), my forearms and elbows are right now. It feels maybe like tendonitis? I have major fatigue too. The girl who used to run herself ragged and fall in bed at 11 to get up at 5:30 is no more. *ugh* With fatty liver though...that could be an issue too...so I think Shelley, this appointment with the rheumatologist at the sclero clinic will likely bring more tests as they try to ferret out what in the world is going on.
  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'ing it and dieting. Those ultrasounds showed the organs all good and with no issues. Tomorrow I go for an EGD to try to find out what's going on with the burping and hiccups. I was scheduled with a Rheumatologist in the area for the 10th, but YAY !!!! The Sclero Clinic just phoned and put me in a cancellation spot. I go Monday. :D I am told this Sclero doctor is amazing and calming (yay again) and so very helpful. I would like you...those who have been in the trenches to help me come up with my list of things I would like to know from her! I have some of my own questions, but what specifically should I be asking? Any and all help would be truly appreciated! Karen
  8. kselibrary76

    Back from the Rheumatologist

    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. kselibrary76

    Cancer has returned...

    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. kselibrary76

    Localized scleroderma.

    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. kselibrary76

    Localized scleroderma.

    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. kselibrary76

    Back from the Rheumatologist

    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. kselibrary76

    Localized scleroderma.

    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 general practitioner because I was having bone pain and muscle fatigue. He did a big series of bloodwork that showed my Vit D was very low (could be the bone pain) and that my ANA was 1:640 Centra (whatever) pattern which suggests CREST/Sclero. My question is ... could my morphea give that pattern as well? I go for an ultrasound of all my innerds (lol, always loved that word) tomorrow. I have an EGD on Wednesday next. I'm scared. VERY. I had been told it was super rare to have morphea AND systemic Sclero. *I also have vulvar and anal lichen sclerosis...any thoughts you have would be GREATLY appreciated.
  14. kselibrary76

    Localized scleroderma.

    Thank you for the article.