janeygirl

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About janeygirl

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    Bronze Member

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  • Location
    Perth W.A Australia
  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 the same process or sit back and wait and see if he changes his mind again.. Yeh I guess you can tell im letting of steam.. I just feel lost and dont know what to do.. Any suggestions?? :unsure: take care
  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 come back in 6 months for my next visit. Then my daughter came in, he asked her a few questions then studied her head for awhile, i could see he was confused. he then said it is the same as mine but not as deep. then he again asked my daughter if she was sure she had not banged her head in anyway, she said no then he asked me the same thing. He then said to me you know what I dont think you have the disease now. ;) he said if he had to place a hundred dollar bet on whether I had it or not he would put it all on that I dont have it. i then said but I went to the problem clinic and saw 12 other specialist and yourself and you all came up with that I do have it, he then said yes but the biopsy I had done on my head did not show any signs of it, (which I new nothing of this before,) all he told me was he was doing the biopsy to see how imflamed it was to see if he needed to start treatment yet and when it came back he said no we dont need to start it yet. but I saw the specialist after I had the results back from the biopsy. end result he said to robyn he doesn't need to see her again unless things changed and for both of us to go home and to get on with our lives as though we dont have it and he will see me in 6 months. Well I soooo hope he is right that I dont have it, but im not convinced because if my daughter hadn't have come there today he would still be saying I have the disease. Now im very confused <_< <_< ~Jane~
  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&#39;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 am I meant to be strong for her. I just wish it was a little while down the track before we discovered her symptoms as then maybe I would have been a bit stronger. But some how I have to stop these tears as in a couple of hours my daughter will arrive as she lives 5 hours away. My husband and I have decided to go back to my daughters place to spend a week with her, so if she does have this disease I will have the week with her to go through things with her. I will be sooooo glad when today is over atleast either way we will know what is going on. A couple of you asked if she has the same symptoms as me, well yes she does we both have 2 dents on our heads that can change so much through out the day, they can be flat then a couple hours later be huge dents or one can be a little dent the other a huge dent and we both have headaches just about everyday, but im still crossing my fingers that she doesn&#39;t have it. 7 more hours and we will know. I will get back to you all to let you know what happens... thanks again for listening ~Jane~
  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&#39;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 what maybe be I should be doing? and I also keep reading that alot of people are taking medicines to slow the process of their diseases, so again would that be something I should be doing?and how would my dermatologist feel about asking to see a rhuematologist or would I find one myself? ~Jane~
  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&#39;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 won't be as tears are coming to my eyes while I am writting this. i know none of you can help in this situation, i guess its just nice being able to tell someone how you feel otherwise I bottle things up and it just makes it worse... thanks for listening ~jane~
  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~