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#1 epasen

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Posted 12 July 2007 - 11:10 PM

Hi!

I were in a hospital for bloodsampels the day before yesterday. I needed to drive there with my scooter, and it was raining like never before.. So when I finally got there I was really wet and cold, and because of raynauds they couldn't find my veins at all.. I'm going to hear the resaults after two weeks, when I'll see my new doctor (26th of July I think), I'll update then again!

Emmi <:

#2 Sam

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Posted 13 July 2007 - 02:23 AM

Emmi, let us know about the results. I'm sorry that is had rained on you going to the hopsital. I think I would of turn back and headed for home. Take care, Sam
Sam

#3 Sweet

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Posted 13 July 2007 - 03:58 AM

Hi,

thanks for taking the time to update us. Sounds like a grueling day! I'll look forward to hearing your results.
Warm and gentle hugs,

Pamela
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#4 WestCoast1

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Posted 13 July 2007 - 04:51 AM

Hi emmi,
Wow, you must have soaked from head to toe! You are certainly lucky that the nurse found a vein to use on such a cold day! Please do give us an update when you get some results back.
*WestCoast*

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#5 Elehos

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Posted 13 July 2007 - 05:05 AM

Oh, Emmi!

My heart goes out to you! You're a strong and very brave person to have gone to the hospital like that--I don't think I would have made the trip! Please do keep us updated on the results, and we're all hoping for the best for you.

Best wishes,
Elehos

#6 epasen

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Posted 22 July 2007 - 11:14 AM

Oh my bad luck.

They postponed my appointment with three weeks, so now I have to wait for much longer. I wished I could see the doctor soon, but I hope I can change the time before the school starts. Hopefully..

#7 epasen

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Posted 31 July 2007 - 07:12 PM

Oh my, only 2 days to go! My boyfriend's friend has had a lot of trouble with his back (needed a surgery) and he has told me about the hospital in our town, and these things are not really nice.. I already knew that this hospital is not one of the best, but now I'm even more worried about going there, because they know nothing about scleroderma, and I'm so afraid that I'm not getting any good treatment from there.

Still I'm lucky I talked to this guy: he said that for 2 years doctors in here said to him that "everything's okay", but then when he went to a specialist at another hospital, they said he needed a surgery, otherwise he could paralyze very soon. Now the guy is okay, and after this I know what to expect and if it seems so to ask another opinion.

So, part of me is very ecxited, part of me is very concerned. Hope it will be all right.

Wish me luck!

#8 jefa

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Posted 31 July 2007 - 09:09 PM

Hi, Emmi. I can understand your concerns and I hope they are unfounded. You can't assume that because someone else appears to have been given less than adequate care that you will share the same experience. Who knows what his situation may have been. Please let us know how things go.
Warm wishes,
Jefa

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#9 LisaBulman

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Posted 31 July 2007 - 11:59 PM

Hi Emmi,
Try to go in with a positive mind and hopefully you will see a caring, compassionate dr who will have some answers for you.

Hugs,
Lisa
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#10 epasen

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Posted 03 August 2007 - 10:32 AM

Sooooooooooooo...

I went to the hospital today. I was so nervous and I almost threw up. But I made my way to the dr's room without doing that. There was this woman who was a substitute for the "real dr". First impression was that she's pretty relaxed and nice.

She told me about the bloodsampels and they were all pretty okay, nothing unusual. It seems that scleroderma is only progressing in the skin, and we came up with a deal of going there again after few months to see if there's been some noticable change with the skin or something else. I've allso got a medication for Raynauds now, can't remember the name of the medicine right now.. Anyway I hope it's going to work, cause finnish winter will be awfull to go trough with this next year, cause this has never been as bad as it is now. I'm just a bit concerned about ecxercising, cause I have to teach fast tempo dancing/aerobic 2,5 hours once a week, and I have other dancing lessons too.. Well, we'll see how that'll work out after the summerholiday.

The dr will also send me to a dermatologist to talk about the skin. She was afraid to start medication for scleroderma cause there were no signs for infection or something like that, and she didn't have a clue how to stop progressing in the skin.. Anyone has any experiences with that? I hope I'm going to see that dermatologist soon. Next time I'll go to the reumatologist I'm going to meet my "real" dr.

I'm still worried about the pain on my back which appers in the areas where I have scleroderma. If it's getting worse I'll probably go there sooner again.

Well that's about it.. Now I'm just going to wait to see if the skin is progressing more or it's going to affect my fatty tissue/muscles. Hopefully not. I don't know what to say, maybe I'm a bit upset or something.

I still have a one question for you guys who have more experience: Did anyone of you have big scleroderma-skin-area on your stomach during pregnancy? I have big area on my tummy, and I think the skin is not going to stretch as normal skin would.. or? If it's not going to stretch as much as it should, normal pregnancy would be impossible?

Thanks a lot,
all of you.
Emmi <3

P.S. Sorry about all of the mistakes in my text. It's getting really late and sitll I don't speak english as my first language :-D

#11 epasen

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Posted 08 August 2007 - 10:52 PM

Now I've been taking this BP medication for Raynauds for 3 days, and it makes my mouth dry and me very tired, but it helps for coldness in fingers and toes.

#12 lizzie

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Posted 09 August 2007 - 08:35 AM

Hi Epasen , I'm afraid I can't help with the question about tight abdominal skin and preganancy , hope someone else can. I just wanted to say ,stick in there with the medication for the Raynauds, I found the side effects a problem at first a your body gets used to it after a fairly short time and then the side effects such as tiredness and dry mouth do seem less of a problem.
PS think your English is pretty fluent- wish I could speak another language half as well!
Lizzie

#13 epasen

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Posted 10 August 2007 - 02:18 AM

Hei Lizzie,
thanks for listening! I think these side effects will get better after a while, just worried how it's going to affect me when I'll start training again. Low BP probably won't help with that, I suppose :-D