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Mine And My Daughters Dermatologist Appointment


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5 replies to this topic

#1 janeygirl

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Posted 18 August 2007 - 12:08 AM

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~

#2 Sweet

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Posted 18 August 2007 - 01:31 PM

Wow Jane,

Your mind must be swimming! How strange! I for your sake and your daughters hope that you don't have it. Time will tell. But his advice to get on with life is a good one regardless.

Much love
Warm and gentle hugs,

Pamela
ISN Support Specialist
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#3 janeygirl

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Posted 18 August 2007 - 02:06 PM

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~

#4 jefa

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Posted 18 August 2007 - 08:53 PM

What an intense day that must have been for you and your family, Jane. I think it all sounds very promising, and at least he is continuing to see you. I think it is the right thing to keep coming back for yourself, but to let your daughter get on with normal things. You can keep the watch for both of you and stick around here reading up on anything that can help you keep informed while you wait. Hugs to you all.
Warm wishes,
Jefa

Carrie Maddoux
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#5 janeygirl

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Posted 19 August 2007 - 01:39 AM

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~

#6 janey

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Posted 19 August 2007 - 04:37 AM

Jane,
Quite a confusing ordeal you have been through. That's why it's always said that any type of scleroderma is a "difficult diagnosis". But let's do side with the positive on this one and say that you and your daughter don't have it. It's always easier to live with the good news. Just keep an eye on things, but please move on with your lives as the doctor indicated. Stress can actually cause illness and make existing things worse. So the best thing to do right now - is have some fun. Celebrate! Plan to return in 6 months with no dents or no change in the dents.

Thanks for letting us know how things went.

Wishes to you and your daughter for long, healthy lives!
Janey Willis
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