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#1 Crissy

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Posted 08 June 2008 - 12:57 PM

Hello.

My mom is 60 years old, and going in for a biopsy this Friday.

About six months ago she started noticing that the skin around her waist was getting very tight, shiny, and hard. Since then, it's spread to different sections on her upper abdomen, breasts, and one shoulder. She doesn't have anything on her hands, feet, or face...but her face does sting and burn some.

In all the information that I've read about scleroderma, most of the time the skin condition starts on the hands or arms. Did any of yours start on your stomach? Does that mean that the disease will be more progressive?

Also, she doesn't have Raynaud's syndrome. Does everyone with scleroderma have that?

I'm just confused because so much of what I'm reading doesn't match with her... just the tight, shiny, hard, itching skin.

Any info would be so appreciated.

Crissy

#2 jefa

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Posted 08 June 2008 - 01:05 PM

Hi, Crissy and welcome to the ISN Sclero Forums. I am so sorry to hear about your mother's difficulties, but glad you have found this excellent resource for information and support. For the moment, I wouldn't panic too much trying to assign probabilities. Wait for the biopsy to see what the doctors say.

I am 60 myself, btw. Not everybody who has scleroderma has Raynaud's. Truncal involvement probably means diffuse rather than limited involvement, but not necessarily progressive. The fact that she is getting a biopsy sounds like she is getting appropriate attention, hopefully from a rheumatologist or dermatologist. I would assume that she has also received all the usual blood tests. Do keep us posted on what's happening.
Warm wishes,
Jefa

Carrie Maddoux
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#3 smac0719

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Posted 08 June 2008 - 01:57 PM

Welcome to the forums. This site is a great source of information from both the clinical and personal aspects. My skin involvement started with my arms and feet. I do have some tightening on my stomach, but it's limited and nothing shiny. I was diagnosed with diffuse sclero 12/06, but have probably had it since '04. I am just being diagnosed with Raynaud's, but I do know that not everyone develops it. Continue to ask questions and seek information. If nothing else, you'll find a good community of support here.
I may have Scleroderma, but Scleroderma doesn't have me!

#4 Guest_Sadie_*

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Posted 08 June 2008 - 02:30 PM

Crissy, Welcome to the board! This is a great place! Everyone is like family on here!
There is alot of good info on here. Whenever you have questions or just want to talk,
we are all here for you! I can't think of anything to add but I just wanted to welcome you here!
Sadie

#5 Margaret

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Posted 08 June 2008 - 03:09 PM

Hi Crissy ,

Welcome to the forums. My son didn't start with skin issues or Raynaud's. His was all internal with esophageal dismotility, restrictive lung disease, major fatigue, and vocal cord involvment. I don't think there are two people on this forum who have started with the same symptoms or share the exact same progression of the disease. That is why it is so hard to get a correct diagnosis.

Take care, Everyone.
Margaret

#6 Sweet

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Posted 09 June 2008 - 05:58 AM

Hi Crissy,



Welcome to the Sclero Forums. I'm so sorry to hear about your mom. I know how worried you must be. Not knowing or understanding makes us even more fearful, so make sure you ask the doctors lots of questions, have them repeat it until you feel comfortable with it.



I will look forward to finding out how things are going along the way, so please keep us posted.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 Snowbird

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Posted 09 June 2008 - 10:36 AM

Hi Crissy

I also think it's great that you're researching to help your mother. This is a great site to be on....ask away...there's always someone here who can help you. I hope you keep us updated on how your mom is doing along the way. To answer part of your question, I have Limited/CREST and have not been diagnosed with Raynaud's yet although my hands and feet hate the cold, they don't turn colours (white/blue/red).
Sending good wishes your way!

#8 isobelle44

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Posted 09 June 2008 - 12:00 PM

Hi Chrissy, I have a band of tight shiny itchy skin on my abdomen that other spots developed on my breasts, shoulders, forearms, some on my back, thighs and shins. I dont have raynauds and my ana was negative. My diagnosis is generalized morphea, I really can't say at this time that I have any internal involvement that is more then an annoyance so im not sure if it is a scleroderma symptom or just my body. I have had my skin involvement for a little over a year.
I have wondered if mine was diffused, but every doctor I have gone to tells me its morphea. Even my scleroderma specialists (dermatologist and a rheumatolgoist). I hope this helps in some way. Sharon

#9 Crissy

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Posted 06 July 2008 - 05:29 AM

Hi, thanks so much for your reply.

I am very confused as to how they diagnose it being morphea, and not scleroderma.

My mom's biopsy came back as compatiable to morphea, and we are waiting for her to get in to see the rheumatologist.

She does not have Raynaud's (sp?), and as far as I know her ANA is negative. But the skin involvement is that she has bands around her waist, going back into her back, lower stomach, upper stomach, breasts, shoulders, and in between her shoulder blades. So I'm not sure how they will be going about determining if she has morphea, or diffuse scleroderma.

At this point, I don't think she has any organ involvement.

Crissy

#10 jefa

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Posted 06 July 2008 - 01:10 PM

Hi, Crissy. Morphea is localized scleroderma. Perhaps you will find the information you are looking for on our Morphea page.


Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)