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janeygirl

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About janeygirl

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    Bronze Member

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  • Location
    Perth W.A Australia

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  1. Thank you magaret and janey for your help... much apprieciated.... If anyone has any other imformation or web sites for this that would be great... Take care Atnaw
  2. Hello Can anyone tell me what cutis verticis gyrata is???? any imformation would be good, if not does anyone know if there is a website like this one that I would be able to get imformation from?? thanks all take care Atnaw
  3. Hi All Well I went and saw my specialist on the 15th feb and he now thinks I dont have linear morphea ( en coup de sabre ) he THINKS I MIGHT have cutis verticis gyrata, what ever that is?... I know a lot of you have had the same thing where you dont get the proper diagnose but it's sooo annoying... You worry your self sick when they tell you the first diagnose, then study up on it, then try and get your head around it which takes ages, then deal with it, then get told you might not have that you may have something else :angry: .. It drives me crazy.. so do I study up on this and go through th
  4. Hi All I am sooo sorry to hear about the passing of sherrill, she was one of the first people to help me on here and made you feel welcome...
  5. Hi havn't been on here for 6 months but am due to go to my dermatologist next week on the 15th so have been thinking about for a bit, which made me think I will come say hello ~Jane~
  6. Hi Jen, i brought a omron automatic wrist blood pressure monitor(rem-1) model about three months ago, which was prescribed by my doctor, and I have not had any problems with it so far. ~Jane~
  7. Hi carrie, Yes I am also glad that he is still going to see me for the moment. But I certainly will keep on this site you learn so many things on here it is great!!! thanks for your thoughts ~Jane~
  8. Hi pamela, You are right about my mind swimming, it is just more confusing now. But atleast before it was 100 percent chance I had it and now there is a chance I dont have it, which is a bonus, even though im not convinced. But yes the best thing I can do is get on with things as only time will tell..... thanks for your thoughts ~Jane~
  9. Hi just updating you on what happend at our appointment. My husband and myself went in first as I had questions to ask him about epilepsy and other things about the disease and as I hadn't told my daughter anything about the disease I didn't want her hearing. he felt my head and said he thought the dents had not got any bigger. I asked him about epilepsy and what was the chance of me getting it as you can get it with the disease(linear scleroderma en coup de sabre) he said there was not much chance as its normally kids or people over 60. I Asked a couple of other questions and then he said to
  10. Thankyou pamela, carrie, sheryl, erin and shelley for your thoughts and support. I dont really know why but even now while I am writtng this I am sitting here with tears streaming down my face, i just can't stop crying. I think its again because I dont think I have dealt with this yet with what can happen to me, but now there is a chance it could happen to my daughter aswell and that tears me apart. She is 21 years old but the age doesn't make any difference she is still my daughter and im the mum who is meant to be strong for her, but I can't at the moment be strong for myself so how
  11. Tammy I want to personally thank you for your support, i think you are such a strong person. you are only new to this yourself and trying to deal with your own things, but you still managed to find the time and strengh to give me support, i think that is great... THANKYOU VERY MUCH and I wish you well ~Jane~
  12. Hi, Well thanks to all of you that got back to me with your thoughts, i now feel that I will definately talk to my dermatologist today about seeing a rhuematologist and what his thoughts are about treatment to slow the process. thanks again for your help :) ~Jane~
  13. Hi, At the moment I am only seeing a dermatologist. I first saw him december when he diagnosed me with linear scleroderma en coup de sabre. A couple of weeks later I saw him again for the results of my biopsy which he said because the disease wasn't affecting me at the moment we won't start any treatment, but when I do have to start treatment it would be methotrexate and said to go back to him in four months, which is friday, 2 days away. Well I have been reading a lot of your posts and it seems most people are seeing both a rhuematologist and a dermatologist so do you think this is w
  14. Hi, Right now I am a bag of nerves. I have an appointment in two days(friday) to go see my dermatologist but this time my daughter robyn is coming with me as I think she may have the same as me (linear scleroderma en coup de sabre). The reason I am soooo nervous is I havnt explained to my daughter what can happen with this disease as I didn't want her to have to deal with all the emotion if she doesn't have it. But I am still trying to understand the disease and deal with it myself. Like normal being the mum I want to be strong for her if she is told she has it, but I already know I w
  15. Hi I take 1 tablet a day for my back, my husband takes 1 a day for his knee and my mum takes 2 tablets 3 times a day for osteo ~jane~
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