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Does anyone have Diffuse?


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#1 Guest_SADIE_*

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Posted 12 April 2008 - 07:15 AM

Does anyone have Diffuse? Do you have symtoms of other scleroderma?I have Diffuse and mine is mixed with other ones. Is this common?

Sadie

#2 Bird Lady

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Posted 12 April 2008 - 08:50 AM

Hello Sadie, I have diffuse. I also have Raynaud's and sores and ulcers on my fingers. Is that what you meant? I'm in the SCOT study and recently finished my 12th IV Cytoxin. My skin and breathing is better. How long have you been diagnosed and what treatments are you on? Good Luck, Birdman (BMW's husband)
Hugs for All,

Julie (Bird Lady)

#3 Sheryl

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Posted 12 April 2008 - 09:02 AM

Birdman, it is great to see that you are responding yourself instead of your wife doing all the typing. I am happy to find that you have made it through all the Cytoxin Infusions. It really is good to hear from you.
Sadie, do you mean that you have so many internal problems like us with a Limited diagnosis? I don't believe most of us on the forum quite understand your question and what type of response you are looking for. Can you rephrase your question while you are answering Birdman. Thanks!
Strength and Warmth,
Sheryl

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#4 Guest_SADIE_*

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Posted 12 April 2008 - 09:19 AM

Hi Birdman and Sheryl, Thanks for your responses. I'm sorry that I didn't explain myself.When I was diagnosis 18 years. ago with Diffuse they told me I had a mix of diffuse, crest and other sclerodermas'. I have alot of the internal involement, raynauds, joint, muscles problems and small vessel problems. They told us a few days ago in the hosptial that I have progressive scleroderma. I'm confused now. Birdman, I'm on alot of meds to treat the different problems but I'm not on a medicine right now that treats the scleroderma itself.
I'm just so frustrated right now. It just seems like it's one thing after another.
Sadie

#5 Guest_SADIE_*

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Posted 12 April 2008 - 09:26 AM

18 years ago they were also calling it Systemic Scleroderma. I don't know what the differences are with this type and limited? I'm not very medical minded as you can see.

#6 Sheryl

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Posted 12 April 2008 - 09:51 AM

Hello Sadie, I had written a huge paragraph to you and put it over on the wordpad to check for errors. It was a long post. I lost it out in cyber space somewhere. Not often, but sometimes you write a great letter then poof its gone. Anyways, limited and diffuse are both progressive. Limited comes in slow and casually and keeps progressing mostly internally. While diffuse comes on hard and strong and causes more external damage. Then it sets in on the internal progression. I can't think now of everything I wrote. Now, I am worried this will go into cyber space. I wonder how may letters and post are out there somewhere just floating around unfinished and no address to be sent to. I need to shut down my computer and reboot. I won't send this to my spell check program. I hope you are feeling somewhat better.
Strength and Warmth,
Sheryl

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#7 Guest_SADIE_*

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Posted 12 April 2008 - 10:05 AM

Sheryl, your message came out good! It makes alot of sense to me now! The first few years of my illness were very progressive then they stablized for a few years. Just a few years ago it started progressing again but not as bad as the first few years of my illness. Thank you again for putting up with me! How did your MRI go yesterday?
sadie

#8 GocartMoz

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Posted 12 April 2008 - 10:17 AM

Birdman,

It is great to see you posting and I am glad things are getting better. The SCOT study as well as other clinical trials are really helping lots of people. This is so good to see.

Hello Sadie,

I have diffuse scleroderma as well. I have had a myriad of symptoms associated with the disease, including joint and muscle pain, reflux, lung involvement, skin involvement, raynaud's and a host of others thankfully most of which are now stable. Diffuse scleroderma and systemic sclerosis are one and the same as far as I know. Good luck with your treatments. We all know how frustrating this disease can be. Best of luck to you.

#9 bmw

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Posted 12 April 2008 - 11:29 AM

Hi Sadie, Sheryl, and Gocart, BMW is out of town this weekend so I've been on here a little bit. It's really good to know that we have each other to bounce things off of. Good luck to everyone

#10 Sheryl

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Posted 12 April 2008 - 11:52 AM

Sadie, MRI is over. I felt like George Jetson in the old TV program. You slide into the tunnel it makes a bunch of noise, spinning and whirling and crashing and banging. Vibrating was the worst. My shoulder felt like it was being bounce around in the arm guard. Then you come out and you are all fixed. Except when I came out my arm was still just as bad. I was having these visions of grandeur and I would come out all fixed. Oh! That technology will be in the years 3030 or something like that. Anyway, I will call my doctors office midweek to see if he received the report from the hospital. Then see what will happen. Thanks for asking. The new sleep apnea doctor doesn't believe the studies that were done at University of Michigan. So, I have to have them repeated at little old Oakwood Hospital. It is a game of money in my humble oppinion. So I get to go for another sleep study and stay through the next day and take an afternoon nap. I have to bring my breakfast and lunch. I wonder if I can smuggle in some coffee for breakfast. This doctor also wants a PFT which he has the copies of the one I had at UofM in Oct. So we will see what happens. I was so disgusted I haven't made my appointments yet. Colonoscopy will be a week from Monday. I will have been checked inside and out. Maybe I can get on with getting my arm fixed.
BMW, keep posting. We have learned so much with things that have been going on in your life with the birdman. Keep us up to date on how he is when he isn't writing.
Strength and Warmth,
Sheryl

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#11 Guest_SADIE_*

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Posted 12 April 2008 - 12:09 PM

Sheryl, I had a MRI before too. Yes, it is very noisy! I was so glad to get that test done with. So sorry to hear you have to go for another sleep test and then top it off with a colonscopy. I had my share of test last Sun nite at the hosptial. Yes, they need to make these test easier on us. In the ER, they poked me so many times just to get the IV in. Finally they got it in my neck then they decided that they needed a urine test through a catather. They poked so much. Thank goodness the pain medication kicked in at that time.
Sadie

#12 Kaycee

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Posted 12 April 2008 - 02:14 PM

I know I am a little late coming in on this one but I have Diffuse Scleroderma which is also known as Systemic Sclerosis. From what I have been told it is the most damaging and most progressive of all the forms of scleroderma (by my rheumatologist anyway and he lectures all over the world on the subject). I do suffer from Raynaud's, fibromyalgia, sjogrens, polymyositis, am an insulin dependant diabetic and have major GI involvement. It has also affected my kidneys, lungs and heart as I now have mild PAH. But in spite of all of these things, I just keep plugging away trying to live each day to the fullest. I hope this info, as well as the info the others have given you, helps clear things up for you.
Much love,

Kim


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#13 barefut

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Posted 12 April 2008 - 10:14 PM

Hello All,

Sadie, my doctor diagnosed me with "Diffuse Systemic Scleroderma" which I have read is the same as "Systemic Sclerosis". Some doctors don't use the term "Scleroderma" but refer to it as "Sclerosis".

As for your question about whether people with diffuse also have symptoms of other types of sclero, I believe yes, one can have a mix. I have had at one point all of the symptoms of CREST but have not have any calcinosis for over a year now.

There is some good information explaining CREST in the sclero A to Z section here. I'm sorry I have not yet learned to provide a quick link for you. Better go do my homework! :rolleyes:

Birdman, good to 'hear' you!

#14 jefa

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Posted 13 April 2008 - 01:20 AM

The link Barefut referred to is this:

Systemic Sclerosis (Scleroderma): CREST Syndrome


Warm wishes,
Jefa

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#15 Guest_SADIE_*

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Posted 13 April 2008 - 06:19 AM

Thank you so much for the info! It is making more sense to me. It helps talking with others who know what its like having this illness too. I wish I could meet all of you and give you a hug!
Sadie

#16 barefut

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Posted 13 April 2008 - 06:23 AM

Sadie,

((((((((((((((((((((((((Here's a great big cyber hug for you!)))))))))))))))))))))))))))

#17 Karenlee

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Posted 13 April 2008 - 07:52 AM

Sadie,

Hugs back to you!! Remember, you can email me or message me anytime you want to talk, vent, or just shoot the breeze. We're all family here in my opinion.

Karen

#18 janey

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Posted 13 April 2008 - 08:07 AM

Sadie,

Just a little more clarification:

There are two main types of scleroderma: Localized (linear) and Systemic.
Under each type there are several subcategories.

Under systemic scleroderma you'll find limited, CREST, Diffuse and Sine.
Recent articles are starting to list CREST as limited. So it's looks like it's an on-going change in terminology and reclassifications. UGH!

You can go to this link and read a short paragraph explaining the differences between CREST, Limited and Diffuse. SINE is a form of diffuse without skin involvement. Both limited and diffuse can cause internal organ damage. Diffuse usually has more skin involvement and progresses faster than limited.


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#19 Vee

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Posted 13 April 2008 - 09:32 AM

Hi Sadie,

I have diffuse systemic sclero. I have interstitial lung disease as a result, which has left me with only 47% of my lungs working. I have raynaud's, of course, and I also have an overlap of Rhuematoid Arthritis.

I'm sure someone else already cleared this up for you, but I didn't read all of your responses, so here is my explaination.

With sclero, you can either limited(skin involvement of the hands, face, neck, and/or feet),or Diffuse(skin involvement all over the body).

Sysetemic means internal involvement, which you can get with either type of sclero. And CREST also can be found in either type, since it is just initials of certain symtoms.

I hope this helps some. Any questions? ask away!
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee