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New to Sclero, whats the difference in PSS and Sclero


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8 replies to this topic

#1 Tabitha

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Posted 02 October 2008 - 03:15 PM

Hi!! My sister (26 now) was diagnosed with Progressive Systemic Sclerosis with Crest 4 or 5 years ago. She had a very large ulcer on her foot which caused a lot of pain. The Doctors told my Sis that the PSS was not considered "Active" however as I am reading are ulcers not an active part of Sclero?? She has had a problem once with one finger and had Bells Palsy during her pregancy. She has just now again started having trouble with her foot trying to break open and become a sore again, however she doesn't have any of these other signs the blue fingers the shortness of breath, the lack of saliva or any of that. Just a sore on her foot occasionally and once on one of her finger. This Crest does that mean that she won't have organ involvement?? We are BRAND NEW to all of this and I don't know anything about anything, :unsure: so ANY help you can give will be GREATLY appreciated

#2 jefa

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Posted 02 October 2008 - 10:46 PM

Hi, Tabitha. I'd like to welcome you (and your sister) to the ISN Sclero Forums. I understand your frustration with a diagnosis which seems a bit unclear, especially when everything you read opens up new and scary things to worry about. I am not a doctor, but it sounds like there is a bit of a conflict in the name 'progressive' systemic sclerosis for a condition which is not 'active'. The terminology these days is usually just systemic sclerosis. CREST is a syndrome which is often referred to separately but can also be another way of indicating Limited Systemic Sclerosis. Are your sister's ulcers on her toes? Digital Ulcers are usually caused by Raynaud'sinvolvement, even if you don't see the blue color. Has she seen a rheumatologist or a scleroderma specialist? If not, this should be the first course of action as prevention of ulcers is much easier than treatment. Meanwhile, both of you should relax a bit and concentrate on getting the appropriate treatment. Feel free to ask any questions which come up.


Warm wishes,
Jefa

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#3 Sheryl

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Posted 03 October 2008 - 12:49 PM

Hello Tabitha and Welcome to the ISN forums. Ask away, we are here for you and your sister. I have Systemic Sclerosis with Crest. I have internal involvement. I hope your sister finds help in curing her ulcer on her foot.
Strength and Warmth,
Sheryl

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#4 Amanda Thorpe

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Posted 04 October 2008 - 07:19 AM

Hello Tabitha

Glad you've joined us here on this forum, you'll get great advice and support here, you've already got some useful links to look at.

I have diffuse scleroderma systemic sclerosis (SSc) as a result of which my mobility has gone to pot and my bowels no longer realise that they are actually suppoed to fulfil a useful purpose.

You don't have to have shortness of breath, blue fingers, lack of saliva etc to have scleroderma, I don't have any of these. It is a unique disease in that it effects everyone differently although there are similarities and unfortunately it is impossible to predict anyone's disease progression. None of us knows what symptoms we are going to get until they arrive. Although it's incurable it is treatable.

Sorry your sister is dealing with ulcers I have not had any but realise from reading/talking to others that they are horrible and painful.

Please keep posting and I hope this helps.

Take care.

Amanda
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#5 Sweet

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Posted 06 October 2008 - 06:16 AM

Hi Tabitha,

Welcome to the Sclero Forums. How sweet of you to do research and be there for your sister. I'm so sorry about her diagnosis. You have received some great information and links thus far. I do hope they are helpful to both you and your sister.

Please keep us posted.
Warm and gentle hugs,

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#6 Tabitha

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Posted 06 October 2008 - 07:44 AM

Thank you for all your help, and warm wishes. I am so lucky to have found this place!!
I'm sorry that you are going through this as well as my poor sis
Thanks!!!
Tabitha

#7 Tabitha

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Posted 06 October 2008 - 07:57 AM

Ms. Sheryl,

My sister was diagnosed with the same (Systemic Sclerosis with Crest.) She sadly enough was diagnosed before she had medical insurance coverage, so we are now in the boat of not being able to get her seen like she should be. No organ involvement as of yet that we are aware of. Just the skin as of now, she gets the collegen deposits under the skin that make horrible sores. Can you tell me if just because she was diagnosed with Systemic Sclerosis with crest does that mean it is likely she will also have organ involvment? How long did you have the diagnosis before you had organ involvment? I guess I am probably in the denial stage.. Looking for something else that it could be so that my little Sister won't have to face her own mortality. Thank You Very Very Much for helping me. I am so so sorry that you are dealing with this. I hope today is a good day!
Thanks,
Tabitha

#8 Sheryl

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Posted 06 October 2008 - 03:27 PM

Tabitha, I was diagnosed with SSc with Crest because my major symptoms were bowel problems. Then esophageal and reflux (Gerd) problems. Raynauds wasn't severe. I had calcinosis and minor issues with Raynauds. Sometimes siblings have issues that differ yet are similar. Make sure you keep a close eye on your health. Don't over do while trying to help your sister. Once your sister accepts she has a rare disease that can be kept under control and it isn't something like a brain tumor that gives her only a few months to live then she will be fine. Learning to cope at first can be hard. We all finally figure that there are many people who have much worse prognosis so we should be happy and we get busy getting on with our lives. We get a few knocks every now and then. We help each other pick up our spirits and get on with fixing what ails us at any given time. We can get days or weeks of different issues that affect us. We can have severe joint pain one week. Hardly walk or climb stairs another week. We itch like crazy or have severe fatigue that can last days or weeks. Many of us experience some of the same things. But, we don't all experience the same things in the same time frame or in the same order. Just give your sister support and help if she asks. Or just do things because you want to and she will appreciate what ever you do for her, that was above and beyond what you normally would do. The research here will help both of you. I hope one day your sister will come on and be a part of our group also. We have a few caregivers and spouses that are both involved with ISN forum. Siblings would be great also. If you have other questions feel free to ask. I will be in and out over the next few days. You can always private message any of us with questions you might have and don't feel like you want to put in front of the entire forum.
Strength and Warmth,
Sheryl

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#9 Nina

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Posted 06 October 2008 - 03:42 PM

Welcome Tabitha ~
And please encourage your sister to join us as well. You will find lots of valuable information here, via the Medical link, but take it slow and focus on the problems at hand. Sounds like you have a great team going ~ together you will surely overcome the difficulties. The insurance thing is the worst part, I'm so sorry about that, but try not to worry ~ things will work out. Stay positive and move forward.
Much love,
Nina (DE)