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Onset and progression of disease

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#1 Tammy


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Posted 23 March 2008 - 06:49 PM

I was wondering if there is a way of telling when this disease started in individuals. My Raynaud's started when I was about 13 or 14 or so would that be considered onset? Also, and I know that everyone's disease progresses differently, is there "common" progression rate? I was wondering because my ana pattern indicated limited systemic and it progresses more slowly but I am experiencing late stage symptoms (loss of bowel and bladder function... UGH!). My primary care physician just put me on steroid suppositories twice a day for 14 days and wants another colonoscopy done.

#2 Sheryl


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Posted 24 March 2008 - 01:33 AM

Tammy, that is how mine diagnosis came about. I went to my family doctor with the problem of first just the bladder incontinence then on to hysterectomy and bladder suspension. Then came the bowel incontinence and diverticulitis. Nothing was ever said that this was end stage. Now I just take prescriptions for bacterial overgrowth a few time a year or when ever I am being attacked. Going to the gastoenterologist is what finally made the difference to me. He kept pinching my skin in the operating room, after the nurses had such a hard time getting the IV in and functioning. He kept asking me questions not pertaining to the colonoscopy or the endoscopy he was getting ready to preform. In my mind I am saying to myself that I had some kind of kook in the operating room with me. The medicine to make me dropy was kicking in and it was hard for me to keep up with all his questioning. I finally said NO more questions because I can't think. After the procedures were over he came and talked to me before I was leaving. He told me what he suspected and all the results of the tests he just did. He needed me to make an apt. and come to his office for further studies. That problem and other problems have been taken care of. I could be wrong but I don't feel like I am anywhere near end stages. I guess it is all perspective. At the time of the problem I had even bought a package of depends. Whew! I never had to use them. I didn't think the situation could be rectified so easily. Think positively Tammy. If you are still having problems get yourself your own gastroenterlogist and he will know what to use to set you to rights. My remedy is 6 pills a day just for that. If you need more information you can post or email me. Sheryl
Strength and Warmth,

Sheryl Doom
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International Scleroderma Network (ISN)

#3 peanut


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Posted 24 March 2008 - 02:19 AM

Scleroderma varies from one person to the next, so it is difficult to predict how it will advance. Do you see a rheumatologist/scleroderma specialist in addition to your primary care physician? If not, it would probably be a good idea and they would be able to help you with your questions regarding on set and progression.

take care,

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#4 omaeva


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Posted 24 March 2008 - 05:49 AM

From what my rheumatologist has said and what I've heard it's different for everyone.
Although for me I had Raynaud's all my life and no one thought twice about it since my Mother's fingers tended to turn white once in a while but as she aged it went away, we're still not sure if it was the same thing because she doesn't experience any other things that I do. At 12 I developed ulcers though they would heal quickly on their own, and then at 19 I got my first calcinosis lump with more followed over the years around the time I also developed a lowgrade fever and fatigue, just thought it was stress. And finally at 21 I started noticing Telangiectasia. Now almost 23 a little bit of Sclerodactyly on my fingers. I've also always had morning swelling of my hands and feet and face, always thought it was due to drinking too many fluids at night. who knew!

But I think since it's so different for everyone just keep a close watch to any changes you see in your body or how you feel. And definitely tell your doctor everything. Since I just recently started seeing a reumatologist he is planning on doing tests every three months this year along with a full exam just to see how things are progressing, then I will go to once a year.

#5 Sweet


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Posted 24 March 2008 - 06:16 AM

Hi Tammy,

Unfortunately, there isn't a clear cut answer for your question. This is a highly variable disease, and there isn't a way to pinpoint a lot of the questions we all have. The key is listening to your body, reporting everything to your doctor and working with the treatment plan they have for you.
Warm and gentle hugs,

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International Scleroderma Network (ISN)

#6 summer


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Posted 24 March 2008 - 12:04 PM

Hi Tammy,
Mine started off a little bit differently, I first noticed about 12 months ago that I had a sore ankle and achilles tendon pain/stiffness especially first thing in the morning. I had an ankle xray which was normal and then a blood test which showed a high ANA -1600, from there referred to a rheumatologist.

From then on I noticed almost immediately, 2 slightly swollen fingers, Tachycardia, fatigue, raynauds- mainly in the feet, pain in the lungs and breathing problems. Reflux also comes and goes, swollen ankles and feet, and now my Pulmonary Function Test has revealed a decrease at a steadily rate in the DLCO, which may mean Pulmonary Hypertension or Interstitial Lung disease.

I have no skin involvement as yet but have experience the sensation of tightening in both wrists and the face area.

As you can see no two people are the same with this disease, I find strangely enough though that I didn;t experience raynauds until after I was diagnosed.
I also have a positive anti-centromere pattern which suggests Limited Scleroderma/Crest. I also may be developing ulcers on my hand and feet.

I hope this helps with your questions.

Take care