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Biomarker for Diffuse Scleroderma skin has been discovered!


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Trying To Understand All Of This?!?


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#1 Tammy

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Posted 06 August 2007 - 03:11 PM

My doctor thinks that I have sclero, I have been reading a lot of the information on this and get as familiar with it as I can before I make an appointment with a rheumatologist but I am sooo confused, systemic, diffuse, linear?? I have found that a lot of them talk about the hands and up, but what about Raynaud's of the feet als, where does that put you??!!?

#2 WestCoast1

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Posted 06 August 2007 - 03:43 PM

Hi Tammy, Welcome, I am glad that you posted. This is a great place to find support. The rhemuatologist can tell you what you are looking with the Scleroderma by your sypmtoms and your blood tests. I hope that you find a doctor that knows about Scleroderma.

Here is a link to the ISN about finding the correct diagnosis for Scleroderma: Difficult Diagnosis is a good place to start.

Also takeing a list of symptoms and concerns with you to the doctor can sometimes be helpful...sometimes we feel so overwhelmed with everything that we tend to forget some very important information.

Here is a link that mentions Raynauds also effecting the feet.

Keep posting, we're always listening...


*WestCoast*

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#3 Tammy

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Posted 06 August 2007 - 04:13 PM

How do you know what symptoms are related, do you just make a list and let them figure it out?

#4 janey

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Posted 06 August 2007 - 05:05 PM

Tammy,

 

Welcome! I'm sorry you are having health problems and is suspected to have sclero. You have found a great support group and place to get lots of good information.

Erin gave you some of the best advice when seeing a rheumatologist for the first time - make a list of symptoms and concerns! It doesn't matter if you think it is or isn't sclero related. Just write everything down. Since diagnosis I have realized that some symptoms that I didn't think were sclero related actually were. So just put down everything.

Also you might want to go ahead and make that appointment with the rheumatologist. Sometimes it takes a few weeks to get in. Let us know when your appointment is and how it goes.

Again - welcome!


Janey Willis
ISN Support Specialist
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(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#5 Tammy

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Posted 06 August 2007 - 06:12 PM

Thank you for the replies, I started a list this evening! I am getting a little more nervous now, the more I read the more I realize that this may be a reality for me. Who knew that something like IBS could be related to this! I haven't told anyone in my family yet other than my husband and my aunt so you guys have been more help than you know, I can't express! Thank you so much for the "hugs" I could really use them now. Big hugs back :)

#6 Tammy

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Posted 07 August 2007 - 01:44 PM

Hello again! Okay, I'm ready to make my appointment, I just have one more problem...I need a rheumotologist!! There are only 2 close to the city that I live in and I have been to see one of them already, he wouldn't treat me even though I had most of the symptoms back then, the other dr is his associate. I would not mind to travel (my hips might tho!!, lol) but I have no idea about the other dr's around, you can find them all day long in the yellow pages! Is there any where that I can go to find one in my area that specializes in this? :blink:

#7 Sweet

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Posted 07 August 2007 - 01:51 PM

Hi Tammy,

Here is a link from our website that lists all of the Scleroderma Experts. Hopefully there is one not too far from you.

Good Luck!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#8 Tammy

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Posted 07 August 2007 - 02:33 PM

Whoa!!....the closest specialist is over 300 miles from me, anyone happen to know of anyone good in the Arkansas/Oklahoma area??

#9 janey

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Posted 07 August 2007 - 03:28 PM

Tammy,
Yes - 300 miles away is a long way to drive on a regular basis, but it might be worth making one appointment just to get an opinion as to whether or not you might have scleroderma. However, if you want to get started in establishing a relationship with someone closer here are a couple of links from the American College of Rheumatology.

Rheumatologists in Arkansas

Rheumatologists in Oklahoma

Hope you find someone near you and that works out well for you. Please keep us informed as to what's going on.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#10 WestCoast1

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Posted 07 August 2007 - 03:39 PM

I am sorry I don't know of any specialists in your area. If you don't or can't travel 300 miles than maybe you could visit the other doctor that you hav'nt seen yet. You could view this as your first step...from there if you respect the doctor than you should trust his/her diagnosis...or lack thereof.

As some of us here have found out it is very hard to determine what autoimmune disease is effecting you and whether it is one or several overlaping. This is where the doctor and blood test results come in handy.

When you saw the rheumatologist last, did he give you a blood test for ANA (anti-neuclear antibodies). This test only shows that you MIGHT have some autoimmune stuff going on and would also convince the doctor to do more testing depending on what symptoms you are experiencing.

Hugs &
*WestCoast*

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#11 Tammy

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Posted 07 August 2007 - 03:50 PM

When I went to the last rheumatologist, he said that I had several symptoms but that because of my age and the rarity of this disease he did not feel comfortable diagnosing or treating me for it, that was about 6 years ago. He did no blood tests of any kind, just looked over what my primary care physician sent and talked to me for about 5 minutes.

#12 Kamlesh

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Posted 08 August 2007 - 10:25 AM

Tammy,

Same thing happened to me. I had some symptoms, positive ANA, and high SED rate since 1998. My doctor did not pay proper attention. When I was finally diagnosed in 2005, it had already damaged my lungs and esophagus.

So, If I were you, I would insist more action from doctor. If not find another one who is willing to listen.

Please take care of yourself.
Kind regards,

Kamlesh


#13 Tammy

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Posted 08 August 2007 - 02:04 PM

Well I made an appointment with a rheumatologist today. I did make sure to ask if thia particular dr tested and treated patients for scleroderma, YES, and she is only a couple of hours from me. The appointment isn't until October but I figure if I have waited this long a little longer won't hurt. They did tell me to call once or twice a week to check for cancellations. This will give me more time to get my medical stuff together anyway, any suggestions on what all I should take?

I have one other dilema, at what point should I tell my family about this? I would HATE for them to worry unnecessarily!! My aunt who does know what is going on thinks that I should tell them now, she thinks they would be very upset if I do have to tell them later and they find out that this has been a possability and I have kept it from them. How did any of you handle this?


Thanks Everyone
Tammy

#14 sophie

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Posted 08 August 2007 - 05:36 PM

Hi Tammy,

I was diagnosed with Limited/CREST a few months ago. I did not tell my family until after the final test results. I had known that something was wrong for a long time but had never said anything to anyone but my husband. My daughter was very upset that I had not confided in her sooner. She was sad that I had not given her the chance to offer support. I hated to worry anyone before I knew for sure. It is a personal choice and in the end, I made the decision that I felt was right for me.

I wish you all the best.

Spanky

#15 kramer57

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Posted 09 August 2007 - 01:40 AM

Hi Tammy,

I think it's totally up to you to decide when, and with whom, you feel comfortable sharing the information - it's your health. Family can be a wonderful source of support, but they also have their own feelings to deal with. My husband has been very supportive, but when I told my mom, she went into denial mode. Her response was "You can't have Scleroderma, it's too rare!". It took months for her to accept it. I think she just didn't want me to be sick. It turned out okay, she gradually started asking me about my symptoms & was more open to the idea.
So, just do what you need to do, keep it to yourself or tell people, however you need to do it. That's what I think anyway :)

Karen

#16 Sweet

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Posted 09 August 2007 - 10:10 AM

Oh Yeah!

Glad you have an appointment in Oct.

As far as telling family. My husband is the only one I talked about it with before I had a final diagnosis. Then I basically spoon fed friends and relatives with bits of information over time, so they wouldn't choke on it. :) You need to do what you feel is best in your situation.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#17 truman

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Posted 12 August 2007 - 12:09 PM

Sweet:

That's exactly what I'm doing at this point, spoon feeding certain friends and relatives at this point and getting reactions as I'm not quite comfortable with the situation either as of yet. My two sons fled upon the news, which I never, ever thought they would desert me during this time and I haven't heard from them since, nor do I know where they presently live. I thought friends would shy away or be afraid to get near me, but you know what? Nope....they've been true friends.

Tru
Tru

It is what it is...........

#18 Lillskuzi

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Posted 13 August 2007 - 08:05 AM

I have spoon fed different people, too. It feels weird not saying anything to my grandparents, aunts and uncles etc, knowing one day if I am diagnosed, they would need to know...but right now I'd rather not discuss it.

I guess it is a personal choice. Some of my best friends and my close family know, and I couldn't manage without sharing it with them, even though I think it is harder on them than me!
Susie

#19 Sweet

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Posted 13 August 2007 - 04:14 PM

Hi Tru and welcome to the sclero forums.

I'm so happy you have joined us. You've had a lot of good things to say, and we all benefit from each other.

Again welcome!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)