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Everything posted by kselibrary

  1. I don't know if this helps at all, but I have been referred to an dermaimmunologist. I didn't even know one existed! He only see's people with immune related skin disorders, and is a researcher. I'm hoping for good things from him. I see him on the 28th. Just wondering if you couldn't see if one is in your area as well. Good luck.
  2. Tru, I am sorry about your toe. I love the way you look at it though. I had a bad night last night, but a bit overwrought and let emotion take me. What did that do, it seems to have made the Lichen Sclerosis flare. BIG TIME. Got a gander at it today with a mirror...ugh. Red, inflammed, the area above the clitoris irritated, the line along one vulval lip..ouchie. Today is rheumatologist day for me. I'm almost afraid to go! OH...went to the dermatologist yesterday (boy howdy do I need a different one...he was so busy doing microdermabrasions, that my questions on how to treat my morphea, and the 4 new plaques that have show up...made him late for it...my husband was ANGRY over this). Got corisol injected into the plaques, and some spray he wants me to use that cost $400 at CVS. Read the ingredients and it is the same strength and the same drug as I am using on my vulva in ointment form...I am not paying $400 for the spray. YIKES. I hope you all have a beautiful day. I may go walking in the fall sun for a bit after the rheumatologist...hoping for positive things. K
  3. Vulvar biopsy in. Lichen Sclerosis is confirmed. She thinks they caught it very early. Even though I knew it...it's still a bummer.
  4. I love you Tru. I'm sorry you were up and hurting, and I talked to a friend, who is a therapist, tonight, and am coming to understand control freak issues. I do 'get it'. I am calming down. My initial response is always panic (tis a curse), then gradual understanding. Thank you for your post. Today is dermatologist, and record gathering for the rheumatologist on Tuesday. I plan to stay busy, and stay proactive. I've decided I may as well name my morphea spots as they are going to be with me for some time probably. I may as well be friends with them...and I've decided its time to try and 'control' the worry. Oh, and I use no special cream, silly. I think ornery is what keeps me as I am. B) Sheryl and Erin, Chat last night, a blessing. Thank you.
  5. Janey, Huge hugs to you. I've a friend that is a therapist and we talked tonight. She said, 'you control freaks have the hardest time coming to terms that you can't fix something and you must just deal with whatever it is." She also informed me it is alright to be scared and human, and that control freaks read....it's what they do, until they feel they understand, and that, in itself is some form of control of the uncontrollable. I think that makes a great deal of sense! Now more hugs to you as that blessing is my grandson, not my child. :D Happy dancing all over that you would think I could be young enough to have that baby. I'm almost 49 years old. That baby is my blessing though, one of the biggest ones in my life. So thank you. I am blessed, and I know this...and I am thankful for those blessings. I've decided to keep a journal of this whole thing, and I plan to begin each page by listing 5 things that are truly blessings in my life. That being said...ahem (pessimist alert), I'm still freaking scared! I don't think I'd be so scared if it were the diagnosis of Morphea.... but it's the all over itching (face predominant, but I'm so freaked out that could be STRESS!!!) Raynauds (which I've had for 15+ years) Bowel issues (and I've had them for 25+ years...all of a sudden they seem big and scary, when they never were before) and the ever lovely biopsy and thought of lichen sclerosis. *slaps self....and stumbles off the worry box* I hope to make it to chat. I hope that doesn't chase others off. LOL ~Karen
  6. Sheryl, I'm gonna try and be in chat tonight. I've so many questions! I see you live in Brooklyn, MI. I live in Howell, MI !!! I was just contacted by Barb (I love that woman) from a sclero support group, and she seems to always bring me peace of mind. I seem to not be able to get over the worry about this morphea, and it seems hubby has found 3 more spots that look iffy. I feel bad complaining about them because...well, others here have so much more to deal with. But it scares me, that and the lichen sclerosis. Yesterday I was up...today (yell at me Tru) I read too much and am blue again. Methinks I need to get those 20 'covered by my insurance' therapy sessions started! Me also thinks, hubby needs to suspend my too much reading privileges and take me out to spend money to keep my mind off it (and boost Michigan's economy) :D ~Karen
  7. Tru ~ I have two Cavs...and I love them to bits...went from bulldogs to cavs, so quite a difference, personality and look-wise. Dear powers that be, per the TOS of this site, is it allowable to post links to places like photobucket so we can share pics of things like our dogs (I'd love Tru to see them). Can links to that be sent via PM?
  8. Sending you good thoughts. I'm so sorry to hear this is happening.
  9. Erin, Thank you for the kind welcome. I just heard from the gastro. All my results are in, and all good. Nothing showing in any blood tests that would indicate systemic. I feel MUCH relief in this. I'm glad the gastro had me go have them, so I'd not fret through the weekend. So it looks it may only be the morphea for me....and I'll stay on that, and do what I have to to make that better. Also will be seeing the rheumatologist to be doubly sure I am doing as I should. Hugs all around, and let us all now form a circle (or are you all line dancers?) and do the happy dance! ~Karen
  10. I'm calling the therapist today. I just found out my insurance pays 100% for 20 visits! What a great thing. Barefut... I was glad to read it the counselor helped you. I think one of the things that will help me most is getting my blood results back. My Monday dermatologist appt and learning how they plan to treat the lesions, and the Tuesday rheumatologist appt to cry all over him and unburden all my fears, see what he has to say about them, besides...'good grief woman, I'm going to have to charge you extra for those three boxes of tissue!!!". Thank you, sweet lady! Sweet, Apropos name! I will look at the link. Thank you for it. I believe what has helped me most is what everyone (and especially Shelley) wrote. I feel so good, yet am so scared. I think it is the scare of what happened with our neighbor lady. As soon as the word 'scleroderma' was said...my head and heart went to her case. I too began digging a grave. I have a list of all my past ills, in order of concern! I plan to take that. I have no questions yet until I get my blood panel reports today and then I am sure I will have plenty. When I called for this appt with the rheumatologist, his nurse informed me he made his appts what you needed them to be, so not to expect a quick in and out (ala the dermatologist, I soooo need to find a new one)...but is more the ilk that wants you to understand and make sure you go home, not a mess...but informed. YAHOO. I will be switching insurances in January, so that I can get to the University of Michigan (I live an hour away). The local chapter of the Sclero group in my area is Ann Arbor and the wonderful woman I spoke to from there is really encouraging me in this. Thank you for your kind words...your encouragement, and your help. Tru, Oh sweetheart, your poor toe!!!! How did it get that bad. I know nothing about gangrene! Methinks you need a new general practitioner!!! You go find a new one of those, and I'll go find a new dermatologist!!!! How could he have missed that? It seems to me that would be fairly obvious. I'm so very sorry to hear this. I can't see your av as I type this, but what type of dogs do you have? I think it is a cocker in the av, if I remember right. I have Cavalier King Charles spaniels. I love those little furballs...they are a menace, but so cute. I hope you begin feeling better and better. You know I wish you only good things. xo Jefa, Thank you for the link. I actually ordered it through the library I used to work at, and it is on it's way! I am anxious for it to get here...thank you for the link. Today I wait for blood results. The next step on this road. Shelley's post has me feeling so much hope, I am afraid of it! LOL How silly that is. It was very helpful to read that logically and statistically I should be in the 98%, not the 0-2%. I got a sclero sticker for my car in the mail today...I plan to put it on. I'm considering attending the Piston basketball game with the Michigan group and meeting everyone. Everyone seems so nice, and dang it...accepting and wonderful...why wouldn't I want to meet them. Thank you all again...so very much. I can't even begin to tell you the peace you have given me. Karen
  11. You know, I knew it was morphea. The dermatologist (actually the PA...you know, if you pay for a doctor, you ought to get a doctor *stumbles off minor soapbox moment*) had pretty much AVOWED it was prior to biopsy being back, and when I went to my gastro yesterday he got a gander and said the same thing... I guess kind of *knowing* it and then being told...there is a difference. It broke my heart, and I don't understand why. I am emotion driven, we'll leave it at that. Truman, while I know that if all it is is spots, it's the least...they are still on my body, and I don't know, I guess I worry about is that it? I'm trying to stop reading, but as barefut has noted, some of us cannot help ourselves. We're all different, I suppose, and what a good thing that is or what a dull old world this would be (although at this time...a little dull, I could do with!) I'm so sorry to read of your children. There is nothing more I can say than, that stinks...and I'm so sorry. When you need them most, they leave. You always allay my fears, and any bit of peace anyone can give me is so very appreciated. Tomorrow I get blood work back...may be another bad afternoon for me. I'm not looking forward to it, and yet need to know. What a double edged sword, it stinks. You are so right on the worse always seeming to be represented, and even when you are freaking out, those are the ones that scream at you, aren't they? Thank you. Barefut, A girl after my own heart! My sister in the over think and overload of information in trying to be informed, and be prepared department! :P Hubby said to me that the spots are more white today than yesterday...*wonders if that is from the severe stress overload from yesterday, or not*. He took the day off and we went out warm glove, hat and electric blanket shopping for me. Also to see the movie with Dwayne, The Rock, Johnson in it...the movie was not so good, but the actor warmed my blood and that's a good thing. lol :unsure: Thank you for the pats on the back. I'm still frightened. I took an atarax last night because, to be truthful, I thought I'd lose my mind (had some I was given for itching two years ago...they sure didn't seem to lose their potency any!) I won't do that tonight, I don't like how they make me feel. My finger tips feel all tingly today, all day...probably stress. I have moments of greatness...Thank you for the pats on the back...you were just trying to feel my morphea spots...I know it. LOL That may not make you laugh but it does me. ;) Thank you too! Shelly, Are we allowed to cyber squish hug each other. I'll make it a gentle one! That first paragraph...I actually felt a breath, and a full breath at that, after reading that. First one in days. Excuse the newbie, but...how does one come across the book mentioned? Is it for sale, where and how do you go about getting one? I go to the dermatologist on Monday (and actually see the doctor this time...woo hoo) and he is to begin treatment of the spots. One of the smallest looks like it is going away, or maybe fading? I hope I like the dermatologist doctor better than I did the PA. Close your eyes Tru....I think I will go look at the search sclero.org main site stuff for morphea here in a bit. Thank you for the heads up onthat. Other than my bowel complaint (pipings been awful (no pun intended) for 25+ years), the itching (which I have not had in many months, and only two episodes of), and the morphea...I feel fine. OH...yes, that lichen sclerosis...my gyno did it as a precaution as I had some irritation and this diagnosis caused some concern. She says if it is that, it is likely one of the earliest caught cases of all time! :D THAT BIOPSY...well, let me tell you, OUCHIE! Thank you so very much. Susie, How very wonderful of you to check in and share part of yourself and your thoughts with me. Thank you...I think you are right...once I know what is going on, I'll find a way to peace. Thank you all, so much. I'm so glad I found this site. Karen
  12. My biopsy results came back as morphea. I'm a bit bummed today as well, because I think I see 2 or 3 new spots coming up. No, not a bit. I'm bummed. Anyway, I had already (due to some wise advice) my appt with the rheumatologist set up and will see him on Tuesday. I was at the Gastro today who sent me for the following tests. IGA IMMUNOLOGLOBULIN A TTG - TRANSGLUTAMINASE AB HFP - HEPATIC FXN PANEL ANA - ANA CDT CLOSTER. DIFFICILLE TOXIN (know this one too well) SMAB ANTI-SMOOTH MUSCLE ANTIBODY AMA ANTI-MITOCHONDRIAL AB I have IBS (hoping that doesn't mean something in regard to systemic!) and it has been acting up due to recent antibiotic treatment for a tragus piercing gone bad...thus the c diff test. The rheumatologist has asked me to wait for tests until I saw him, why get poked twice, but yesterday I was at the gyno for a vulva biopsy...and my friends, after you've had that...one more needle poke is small taters. My gastro knows me well, and knows the ability for me to go to the rheumatologist doctor with some information makes me feel a little ahead of the curve. He is also sending me to a therapist, as my anxiety level is through the roof. What do I take to the rheumatologist doctor? I was told a list of any and everything I could think of that may pertain to health issues he should be aware of: Raynauds for 15 years... IBS... Itching all over consecutively for two months each Spring Morphea I can't think of any others right now but will continue with the list. Plus a list of questions with space below to write answers. Is there anything else I should take? Specifics I should ask? I so want to do this right, and be my best advocate...proactive, and as much as I can...one step ahead. Also...I am breathing...but my last question for the night, is it normal to freak out and be so scared? I heard localized scleroderma and thought ok...til I began to read of systemic, and read the list of uh ohs and saw I had several. How do you deal with the wave of overwhelming, oxygen stealing angst that sneaks up on you occasionally? I really do appreciate any thoughts, guidance, or shove in the right direction. Karen
  13. Thank you Sweet. I had THE BEST call from my local Scleroderma support group leader. WOW. Talk about peace that comes with further understanding, a sympathetic ear, the voice of reason (and I mean her voice, it was just...hearing it, it makes me cry now...compassionate and kind, longsuffering and beautiful). I have my appt with the rheumatologist on Tuesday next. He wants me to wait til I get to him before I have my general practitioner send me for the blood tests, but for peace of mind, I want to go in with at least some of them. Is that unreasonable? I don't mind being poked twice, and ... I really want them done. Today was a good mental health day :blink: The past 4 have been spent worrying so much, freaking out entirely...I think I finally wore myself out with it. I'm itching like the devil...probably from stress. The spots on my back seem to be staying as they are, not growing, not sinking in...and also seem to be not so white! Hubby says if we get that biopsy back tomorrow and it is not morphea...he is going to go hug that skin doctor, then punch him in the mush for scaring me so before he actually had conclusive evidence :o Today I had the gynecologist, tomorrow the gastroenterologist, Friday the skin doctor, and Tuesday the Rheumatologist. I think I need a personal secretary!!! ;)
  14. Tru, May I ask how long it has been since your diagnosis?
  15. Thanks Jefa for information on how to post a pic... I have posted pics of my back with the 'suspected' morphea on the gallery. for some reason they are showing a bit...oddly, kind of shaded. I probably did something wrong. :blink: Any of you with localized scleroderma (morphea) does it look like that? Heading out on a date with hubby day. I hope you all find some unexpected happiness in this day. Thank you again for your guidance, help and ... for some peace! Karen
  16. First of all, what a blessing to wake up this morning, and find your replies. Thank each and every one of you for taking time to talk to, reassure, and even admonish me. Retired library employee ~ over researching is an occupational hazard. Barefut, My husband is aghast that the dermatologist would even say it was morphea to me before the biopsy was back. Although after my exhaustive (sic) Internet reading, and looking at pics, I do have to admit, it looks like morphea. I guess if it looks like a duck, walks like a duck and turns white and hard like a duck...it's likely a duck. Who knows. Thank you for the ISN suggestion on doctors, unfortunately my insurance does not cover University of Michigan Hospital. I'll begin searching today for rheumatologists or specialists that are in the healthcare network I can use. My question still is, however, even if I get a morphea diagnosis, how does a rheumatologist doctor take that information and then come to any conclusions on if it is systemic or local? I'm so trying to breathe...I'm notoriously bad for being anxious. And when 'stuff' has been going on for 2 years that is unexplained and then all this happens, your head, it goes all over the place with this. Or mine does. Thank you for your words. Marissa, I am glad you feel confident in your move to Memphis. I hope the doctors you find there suit you, and listen as well as help and teach. You say you begin itching when one grows or a new one appears. Do you itch at the site of that new growth, or do you have general all over itching. I get general all over itching. If I understand it correctly you have morphea that doesn't just affect the dermis, but has muscle damage as well? I'm so sorry for your pain. Not being able to sleep must only make it even more hateful. I keep reading on morphea that it starts out with the white/ivory hard skin then gets this red halo around it. Mine is over 6 weeks old, and still the same size, same white, rough, hard, dry skin, no halo. I also have 4 of those red spots (sorry the term escapes me...little red spots from blood vessels) but they are on the front of my abdomen, none on the back. I wish you much luck with your new doctors, and new life. Truman, :mellow: I promise I am trying to calm down. Hyper by nature, and again...I did myself no good by reading too much, and yet I feel this compulsion, even now, to read more. It is like a viscious cycle! I hate it, and that about myself. See...I can admit faults though ;) I had also, in my attempt to figure this all out, read that blurb about generalized morphea. Here is my question for you. I want to know how one goes about finding out that their morphea is ONLY generalized, or how involved it is. Hubby looked this morning and says one of the spots looks substantially lighter, I've been putting cortosteroid ointment on it, and that none of the others has grown in 5 weeks or so. I guess my fear is that they say it looks to be general, and then later on because of misdiagnosis they say it is systemic (is that even possible, or errr...maybe I don't want to know this yet) and I've had years going by I should have been watching it and it is worse than it would have been with a good diagnosis and treatment. SEE...over thinking is a curse, I so wish I could toss that cap in the dust bin! You, Tru, have helped me a great deal, as have all the replies. Thank you. Jefa, I know the advice is hard to take, and I've already this morning not taken it. I believe I just told on myself ... bad me! I have begun trying to drink more water, it is a chore for me...I will persevere. I read the Localized Scleroderma:Morphea information and it only make me have more questions and want to read more. I am trying to refrain from that though. IF that is morphea on my back, it does not really itch. It does nothing, but sit there, look ugly, hard and dry. I asked the dermatologist, when he said Morphea if that was something that would eventually kill me *yes I did* and he said, NO...and it won't affect you unless you are a back model or something. I'm thinking I may want a new dermatologist?? How can he tell me that when he a. doesn't know what it is yet for sure b. has no clue if the morphea is localized, or systemic, or whateva? yep...I'll have to consider that. Thank you for your help as well. I guess still and all, my concern is the systemic (of course it is) and yes, our neighbor dying from it has me very anxious. Is there a fail proof way to prove or disprove systemic scleroderma? Sorry for the redundant and all over the place thought...for me, with understanding comes peace. I'm ready for some peace!
  17. Hello, my name is Karen. I am 48, almost 49, and this past week told I have morphea. I have 5 dime sized spots on the small of my back. I have several questions but prior to that, here is some background health info. I have had IBS (diahrea prevalent) for 20+ years. Deal quite well, I think, with that. 2 years ago, I had severe itching throughout my body, dianosis...nerves. Um, ok?? Last year the same itching, less severe (about the same time of year, and the same duration. It comes about April when we go to the Caribbean, stays for 2 months and leaves). I was sent to my Internist, who sent me to the Endocrine (had some elevated calcium levels) who sent me to the allergist, who gave me Zyrtec, told me it was systemic itching he couldn't figure from what...and sent me on my way. Again...after about 2 months the itching subsided. I have dry skin. I only have to wash my hair twice a week. The skin on my hands is not puffy or tight, it is loose and wrinkly! :D I do have Raynauds. As does my mother and several cousins. I just thought this was a 'family' illness. I do not have it severe. It does make the top digit of my fingers white, then blue, then red...but if I warm them slowly under warm water they are fine within moments and if I go out to x country ski, by the time my blood is pumping I can remove my gloves and not suffer Raynauds. I do also get it in my toes if they get cold. Due to major stress (son with trouble) in my life, I have been battling some stress type issues. Crying, depression, etc etc. I go to the doctor because I got a piercing that became infected, he is giving me a look over while there, and spots the spots on my back. Sends me to the dermatologist. The initial diagnosis is Tinea Versicolor. I get some cream for it, and use it for 3 weeks to no use. The spots are dime size, 5 in all, and have a white, rough appearance. They are hard, and dry. The new diagnosis (prior to biopsy results) is Morphea. I am also suffering severe vaginal and anal itching at this time and go to my gyno on Tuesday for a vulva biopsy to rule out lichen sclerosis. But was in just last week for my yearly, and she said, the tears she was seeing and the color was not typical of a lichen sclerosis, but more like a dermatological anomaly, like allergy, etc. No white skin there, as is typical with lichen sclerosis, or parchment like skin. Alrighty then, here are my questions. 1. For those of you with itching, was it before diagnosis? 2. Did you itch all over, from within, and scratching your skin brought no relief? 3. When you had the itching did you have other scleroderma symptoms as well? 4. Anyone with localized morphea, did you itch all over? 5. Next steps...what should I do? 6. What type doctor do I go to next? 7. Blood work tests I should make sure I have. 8. Questions I should as the doctors 9. I'm so freaking out. I can't help it, I am an avid overthinker and lost a neighbor to scleroderma a few years ago. Truly this is freaking me out, which I know is not helping. 10. My skin is not tight anywhere. My hand skin is loose, crinkly and well, dry, but I don't drink much water. Does the symptoms of skin tightening happen 'generally' in a particular order. ie...hands, forearms, face...or can it begin anywhere? 11. Morphea...I understand that the biopsy will show scleroderma (if that is what this is) but won't tell if it is systemic or local. I really want soon (because I am going to lose my mind) to have the tests run to show the difference. After bloodwork is done, what is the turn around time on results? Wow, what a lot to ask and lay on you all. I know from posting on the ibs boards that more information is better than not enough... I just covet your help. I covet your experience. I hope for your guidance and reassurance. Thank you all...I can't tell you how much I am looking forward to any replies. gentle hugs to you all, brave and beautiful people walking this road. Karen
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