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#1 susieq40


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Posted 29 July 2009 - 05:47 AM

Hey, I'm new and thought I'd introduce myself. I'm newly diagnosed with sine scleroderma, even though it looks like I've had it for a long long time. I've never really been a healthy person, so I'm used to being sick a lot. I was diagnosed with Rheumatoid Arthritis in 2003, and Ulcerative Colitis in 1992. I've been taking medications for the arthritis for a long long time. I'm not quite sure how to feel about being diagnosed with another disease. At first my doctor's thought it was just the Rheumatoid Arthritis drugs, and their side effects. But as my luck would have it...nope.

I'd had a cough since October 2008. And sick with flus and colds all winter. In May 09 though I was feeling so bad and nothing was working, steroids weren't working, and antibiotics didn't work, so finally my regular doctor said I should have a catscan of my lungs, and/or see a pulmonologist. I left feeling like, Oh, what now. But I got on the internet and found a pulmonologist 2 hours away and made an appointment. Not being able to breathe well isn't fun, and not being able to keep up with my little kids was getting on my nerves.

Anyway the pulmonologist ordered a whole battery of tests and bloodwork. I went back the next week for the catscan, echo of the heart, and lung function test. Then I returned again the next day for results of the tests, and bloodwork. She showed me the results and I thought since I had a rheumatology appointment next week I'd talk to that doctor too and maybe we could all figure out what to do next. The rheumatologist ordered more blood tests just to be sure, and ordered the results from the pulmonologist and the scans etc.

In the meantime, I went back to the pulmonologist to talk about the diagnosis, and she wants to treat this pretty aggressively. She says my lungs are a mess, no they aren't gonna get better, but maybe we can slow the progression, and she emphasized that I am only 42!!

I left with no real decision on what to do yet. Both doctor's went on vacation. Guess I should take a vacation too? (I wish.) Next week I have another appointment with the pulmonologist. I decided to try and get a second opinion with someone who is more familiar with this disease. Which is not easy. But found someone in Seattle, which is 12 hours away. Anyway, just got the permission slip signed for my records to be sent there, so we'll see what someone else has to say?

I hope I wasn't too confusing? I'm just feeling overwhelmed. Is there anyone on here with sine scleroderma?

#2 Shelley Ensz

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Posted 29 July 2009 - 06:33 AM

Hi Susie G,

Welcome to Sclero Forums, it is terrific to have you here. I'm sorry to hear about all you've been through. We have plenty of members who have sine scleroderma, and as well, many of us have lung involvement of one sort or another.

When do you have your Seattle appointment?
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#3 Sweet


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Posted 29 July 2009 - 07:01 AM

Hi Susie and welcome!

Soooo glad you joined us. You will find a tremendous amount of information, support and good friends here. I have CREST, but I do know we have many with sine scleroderma, so I'm sure they will chime in soon.

Again, welcome!
Warm and gentle hugs,

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#4 Amanda Thorpe

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Posted 29 July 2009 - 07:35 AM

Hello Susie

Welcome to the weird 'n' wacky wold of scleroderma! I have diffuse cutaneous systemic sclerosis aka scleroderma.

Your post was very informative and as you know yourself one disease just ain't enough, I have 4 autoimmune diseases but there's many here who have more than that!

Let us know how you appointment goes and post any questions as they come to you.

Take care.
Amanda Thorpe
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#5 susieq40


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Posted 29 July 2009 - 12:35 PM

Haven't heard back from the Seattle doctor's yet. Hopefully they are reviewing my reports and will call with an appointment. I've never been to Seattle, so that might be a nice trip! Haven't been on a vacation for over 5 years. We adopted my brothers two boys, who are now 5 and 4. They are only 13 months apart. Since we adopted the youngest one we decided to open our home to a couple more kids, also our two oldest graduated and moved out on their own. So right now we have an additional 3 foster kids, one 16, one 5 and one 10 months. It's been quite stressful around here since finding out about the scleroderma, and not being able to breathe well. I'm just hoping to know what to do next. I know that cutting out some stress would be the first thing to do. And hopefully that will be happening soon, when the 5 yr old foster son goes home to his dad..but we'll see....

#6 Jeannie McClelland

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Posted 29 July 2009 - 01:01 PM

Hi Susie!

Welcome to the Forum. You've sure come to the right place. We have good reliable information, lots of great people, and there is almost always someone who can share first hand experiences.

As it happens, I have sine scleroderma with pulmonary fibrosis and pulmonary hypertension. (I also have 20 years on you. :lol: ) It's almost 3 years since my diagnosis and I'm very fortunate that with treatment neither the fibrosis nor the pulmonary hypertension has advanced much. The medication I take for the pulmonary hypertension has made a world of difference to how I feel. Last Friday I did a nice 4 mile ramble (up in the Rocky Mountains, over a mile high) with friends. I do use supplemental O2 with exertion, but 3 years ago I sure couldn't have done those 4 miles. I also did pulmonary rehabilitation and that was definitely time well spent. It's enabled me to get the most out of my lungs and legs.

I hope your visit to Seattle goes well - a second opinion, especially with a scleroderma expert, is never a bad idea. Keep posting and let us get to know you.

Best wishes,
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#7 Eos


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Posted 31 July 2009 - 03:35 AM

I am sorry to hear you go through all of this. I hope they can figure out what is the matter, and treat it.
I am also 'sine scleroderma'... well most likely they say. My rheumatologist is waiting for skin changes.... which honestly makes me sick. How can you wait for something like this. I mean you wait for a birthday party.... but skin changes ....lol. JUst kidding.
hang in there... and yes get the second opinion with a specialist. I did that and despite having to self-pay it was the best thing I ever did for myself!

#8 janey


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Posted 31 July 2009 - 05:31 AM

Welcome Darlin! Well you have certainly been through a lot healthwise and to be raising all those kids on top of it - how do you do it?!?!?! I'm certainly impressed! I'm sorry to read about your lungs problems and all of the back and forth you are dealing with on doctors. Your idea to get a second opinion was a good one. I too have sine scleroderma. I was diagnosed with it and polymyositis in August of 2003. I did have some skin tightening on my hands at first but it didn't last but a few months. My rheumatologist keeps looking for tight skin, but never can find any. That's fine with me.

I also have lung involvement and heart involvement, along with the standards - Raynauds, controlled GERD and fatigue. Right now it sounds like the most important doctors you have are your rheumatologist and pulmonologist. The more you can get them to work together, the better it will be for you. There are several treatments that can slow, if not stop the progression, but very seldom do things reverse. I had a short stint of lung improvement, so the doctor decreased my meds. Now they're getting worse again. So just stay on top of your tests results and how you feel.

Let us know how you appointment in Seattle goes. We're here for you Darlin!

Big Hugs,
Janey Willis
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#9 susieq40


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Posted 04 August 2009 - 02:00 PM

Thanks to everyone for the support. I've got a lot of people rooting for me. It helps so much to share and talk with people that have the same disease. Makes me feel like there is hope...