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New to Site, New to Diagnosis

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#1 Stef


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Posted 10 January 2009 - 11:01 AM

Hi Everyone!

I'd like to say this site is wonderful! I'm thrilled to find a place to communicate with other people that understand what it's like to have issues with this disease!

I want to start by saying I'm new to the diagnosis of Scleroderma (meaning new as in finding out within the last few days). I was diagnosed last month with Systemic Lupus, the Scleroderma has now been added in as well.

It's difficult for me, as there seems to be many overlapping symptoms of both diseases. I currently experience Raynaud's of my hands, feet, and nose, Livedo Reticula (?) of my legs and arms, tightening and sometimes swelling of my fingers, joint pain, muscle pain, extreme fatigue, headaches, Acid Reflux, and Liver Issues (I also have NASH of my Liver, and have Anti-Mitochondrial Antibodies, but my biopsy did not show any active Primary Biliary Cirrhosis as of yet). I was diagnosed with Asthma as a child (and has carried over as an adult), but now question if my severe lung issues are all due to Asthma, or if there is lung involvement from the Scleroderma.

I see my Rheumatologist this week, and have many questions. I have been on Prednisone 5mg twice daily, and was started on Plaquenil 200mg twice daily (I take other meds for Asthma, Allergies, and GI upset)...these were prescribed for me last month when we though Systemic Lupus was the only issue.

Does anyone know if there are other more specific tests to expect to have ordered my Rheumatologist? Any questions I should specifically ask?

I'm not sure what to expect, and also wanted to ask about good books to read about Scleroderma others have found helpful.

I know there is a lot of info in my post, and many questions imbedded.

Thank you for your time....I'm just so glad to be able to be involved with other people that may understand me!

- Stef

#2 Honey


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Posted 10 January 2009 - 11:50 AM

Yes, I am new also. My rheumatologist says it is scleroderma and I am going for blood work, xrays, and EKG in 2 days. I have started 5mg prednisone. I am hoping for good health.

I started with Raynaud's 20 years ago, but haven't experienced it in about 5 years. Now this! It started with swelling in my feet in October, then redness and tenderness. Then stiffness. I had carpal tunnel surgery in July and was never able to make a fist, even with physical therapy. Both hands are stiff, but not as tender as the feet. I suppose because of the impact and weight the feet bear. I will know more in a few days.

I am so happy for this site. I know we can help and encourage each other. I welcome you and be thinking of you.

Thinking good thoughts is my best weapon!

Kindest regards,

#3 janey


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Posted 10 January 2009 - 03:50 PM

Stef and Honey,
I would like to welcome you both to the ISN forums! (Honey, sorry I missed your initial post). As you both have already found out, it's a great place for information and support.

In reference to what tests to expect, they seem to vary from doctor to doctor. Some doctors run as many as possible and other seem to run tests only if a symptom exists. Here is a link to Common medical tests for scleroderma. Many tests are run in order to get a baseline and to just check to see if something is in the early stages. My first year was one test after another. It was frustrating, but worth it in the long run.

The best book I read during my first year was The Scleroderma Book by Dr. Maureen Mayes. Even after 5 years, I still refer to it.

When you go in to see the rheumatologist, take a written list of all symptoms. Write down all of your questions, so you won't forget. One of the first questions I asked was "how many scleroderma patients have you treated?" It's very important that your rheumatologist is experienced (not just familiar) with sclero. You might also ask about treatment options. Some doctors just treat the symptoms and other try to treat the disease with immunosuppressants and such. It's also good to know what type of scleroderma you have. There are probably 100 more questions you could ask.

Good luck with your appointment. Please let us know how it goes.

Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#4 canon


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Posted 10 January 2009 - 07:12 PM

Welcome Stef,

Sorry to hear you have been diagnosed with scleroderma and SLE. Maybe things are waxing and waning and it will just settle on one. Neither one is nice to have. I have read that those with overlaps have a milder time of it. It doesn't sound like they are correct in saying that either. Can't add anything to what janey has suggested and said. Sorry you are here but welcome again.

With gentle thoughts,

A happy heart is good medicine.

#5 jefa


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Posted 10 January 2009 - 11:22 PM

Warm hugs and welcome to Stef and Honey. Stef you asked about books to read. I recommend the Voices of Scleroderma series. Each of the three volumes opens with a section devoted to professional scleroderma experts from around the world and also includes over 100 patient, caregiver and survivor stories from this sclero.org website. You can purchase the books through our scleroshop.
Warm wishes,

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

International Scleroderma Network (ISN)

#6 Jeannie McClelland

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Posted 11 January 2009 - 05:24 AM

Hi Stef,

Lucky you! I mean that you found the Forum, not that you have been diagnosed with SLE and sclero~ :( I've been reading posts for just over 2 years (808 days since diagnosis) and there has always been someone who has experience or knowledge applicable to my concerns. They're all nice folks too.

I'm with Janey on Dr. Mayes' book. I read it, then my husband did, then my best friend, then my general practitioner! :lol: The Voices of Scleroderma series is excellent, too.

Best wishes and warm hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
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International Scleroderma Network

#7 Nina


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Posted 11 January 2009 - 11:26 AM

Welcome Stef and Honey ,

This is wonderful, and a bit concerning, so many new members! I (and many other members) feel such mixed feelings when we welcome a new member, we are happy that you found us, but we are so sorry for your diagnosis. Please know that this is a wonderful site full of wonderful people. Tons of good information and sincere support and caring.

Ask all the questions you want ~ someone will surely be able to help you out ~ either with direction and/or answers. We are not doctors, but at times I think we can offer more compassion and support than many.

Much love,
Nina (DE)

#8 Stef


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Posted 12 January 2009 - 04:30 AM

Thank you, everyone, for the warm wishes, empathy, and wonderful information. The book suggestions are much appreciated! I already feel better prepared for my Rheumatology appointment tomorrow. I will give an update when I know more.

- Stef

#9 ozzy69


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Posted 12 January 2009 - 09:59 AM

Welcome Stef and Honey,

I agree with everyone on the books. My doctor told me to read "The Scleroderma Book by Dr. Maureen Mayes". It gives you lots of information.

Nina Lynn

#10 Snowbird


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Posted 12 January 2009 - 12:47 PM

Hi Stef

I also wanted to welcome you. Sorry to hear you are going through so much just now. Aside from loads of bloodwork, others tests included sometimes are the pulmonary function test (blowing into tubes etc to test your lung function), Echo Grams-think it checks the heart valves, looking at your nail beds for distorted capillaries for Raynaud's Syndrome (some doctor's put gel on your nails and they just look through a little magnifier/light)...physical exam to move your joints around and check your skin...none of the above are painful or scary. Let us know how your appointment goes.
Sending good wishes your way!

#11 Sweet


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Posted 12 January 2009 - 02:33 PM

Hi Stef and Honey,

I've been away, so forgive me for the late welcome! I'm so glad you've joined our group, I just know you will love it.

Stef I have Lupus as well, and sometime it is hard to figure out what symptom comes from what disease. I've actually given up trying to figure out. Janey gave you a great link to tests and if your rheumatologist is any good, he/she will know what tests to start with.

Again welcome to you both!
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)