razz

Scleroderma Causes

66 posts in this topic

David,

 

You raised an interesting point. What about average stress or even a peaceful life. Woman tend to be analytical thinkers so I think your wife's on to something! Your situation is an interesting one for sure. My grandmother had rheumatoid arthritis but no one else in our family developed anything like SD, just me.

 

 

Razz


Live well, Laugh often, Love much

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Hi:

 

I don 't think stress was the cause of my scledorema. I had just moved from Croacia to United States but, because of my husband's job, my family is used to the moving and we even like it.

I noticed one summer after coming back from a boat trip that my hands were getting purple. I thought it was just bad blood circulation so I decided to see a doctor. For me it was easy to get the diagnosis. That was over 4 years ago.

A month after my diagnosis , I felt my breast getting hard. I have breast implants so I went back to my doctor so he could look at them. One of my implants had ruptured. It was silicone so I think that probably that is what trigger my condition, even though the doctors say that it is impossible.

 

Best wishes to all,

 

Ani

 

by the way, i finally quit smoking. So far it has been 8 weeks, cold turkey.

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Hi Razz,

 

It's Leslie again I was just reading your topic about what cause your Scleroderma. It took me about over 1 year to get a diagnosis which was July 2007. It all started with me having stomach pains and diarrhea, my first doctor taught it was menapause and prescribed acetaminophen. It did not help because I still had the same symptoms and was losing weight fast. I did see a gastroenologist and could not find anything. I then saw some discolorations on my hands and went to a dermatologist, which did a skin biopsy and confirm I have Vitiligo, but still have the stomach problems. Next I had a PET Scan and result was abnormal lymph nodes, that they could not get a diagnosis. I had to remove my neck and groin lymph nodes to get a diagnosis, and that was no good, it show some sign of Lymphoma. Next I had to see an Oncologist which did a bone marrow biopsy and blood test, it came back showing signs of Lupus.

 

With all of that happening I had muscle and joints pains too, my physician referred me to a Rheumatologist which diagnose me with mixed connective tissue diseases, (Scleroderma, Lupus and Vitiligo). These diseases had brought out so much symptoms that is hard to figure out which one is reacting more, I currently have 10 doctors and 12 medications.

 

Still I will like to know what cause this, I went back to when 9/11 happen at the world trade center, where I was working downtown. Or maybe where we use to live in a dirty building where the people kept their apartments and the building unclean. Even the environment with all the toxic that is in the air and food. Hopefully when they do find a cure, they can find the source of this disease.

 

 

Keep well,

Leslie R

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Hi Ani,

 

Congratulations on quitting smoking!!! Although you went cold turkey, I'd have to think you have developed some techniques for doing it. What are your secrets?


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

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

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Hi Ani,

 

I'm surprised your doctor(s) don't believe your silicone implants have anything to do withthe onset of SD, especially when there have been studies and cases suggesting otherwise. It's so important to find a doctor who's a knowledgeable specialist in SD, especially with the variations of doctors' opinions on treatments and causes of SD.

 

Good luck and congratulations on staying smoke-free!

 

 

Hi Leslie,

 

I'm glad your doctor referred you to a rheumatologist who was able to properly diagnose your condition. It sounds like they are doing a thorough job in testing your symptoms. I hope you are feeling better and getting some relief.

 

I'm motivated and inspired every time I read someone's experience to bring awareness to this disease. I am hopeful that some day we will know the cause and have a cure!

 

The 9/11 tragedy is an event we will always remember. I'm sure those airborne toxicities affected many people.

 

 

 

Stay well,

Razz


Live well, Laugh often, Love much

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I've been trying to think back and the only thing I can think of is "depression". I was working for a contract house as an office manager for the company I retired from. When the job was close to ending, I remember thinking "what am I going to do now. I'll be all alone. No reason to get up." Don't know why I felt that way. When I retired I couldn't get the smile off of my face. The job ended March 8th. I went in for a colonoscopy the next week and it was all down hill from there. My desire for food disappeared. I'm 5' 7" and went from 153 lbs to 123 lbs in 8 weeks. I never said very much to my family or friends and by the time I did, I couldn't drive because I was so weak and I could hardly breath. Nobody had seen me, so they had no idea. That sure won't happen again.

 

But now I'm getting fat <_< and sassy :rolleyes: again and I am sooooo thankful.

 

Hugs and cheer,

 

Christy


Love makes the world go around!

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Christy,

 

From what I understand any kind of transition, both good and bad, can affect our immune system. I think you hit it on the head when you mentioned retirement. To go from being a productive worker to being a full-time stay at home wife, is a huge adjustment to say the least.

 

I am so glad to hear you're curvy and sassy!!

 

 

Hugs,

 

Razz


Live well, Laugh often, Love much

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Bird dander! In 2000 we bought a home that the previous owners allowed birds to fly around. After about a year we were digging under the deck where they cleaned the bird cages and was overexposed. I ended up with Non-specific Interstitial Pneumonitis (a lung disease) which after a biopsy of my lung confirmed that it was brought on by the exposure to birds. We had to rip out all our carpets and repaint the inside of our house.

 

What really shocked me was about five years later after being diagnosed with Scleroderma, I was reviewing past medical records preparing for disibility and found a note from my Pulmonologist from the UWash. predicting that I would have scleroderma in about five years. Well he was right! Also, I was under a lot of stress at work when I was diagnosed with SSc.

 

Joel

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I too had lots of stress.Have had ulcerative colitis for many years,In early 80's developed a rash on arms and elbows that doctors.just could not figure out what it was.they finally found something that got rid of it.Then husband took a job in Venezuela and I worked in housekeeping at a local casino.I will ALWAYS believe that its the chemicals that we used on walls floors bathrooms glass and everywhere else that caused my diffuse sc diagnosis.Of course proving it is another thing but I do know that prior to being exposed to that I didn't have too many problems except for the uc and it is a huge problem on its own.So it seems that a lot of others were exposed to chemicals as well so thats got to be something there.Anyway its there and I take it day by day how else is there to cope?I always say things could be worse! Hugs to all. kittyears.

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As is true with limited/crest, Raynauds was my first symptom. When I developed Raynauds everything was A-OK as far as I can recall--no stress, etc. Other symptoms appeared over time such "sausage" fingers, worsening Raynauds in my hands and it spread to my feet and ears.

 

There were also a couple of spots on both sides of my face that had become so dry or something that I could not put enough lotion or cream on them, but nothing helped. In hindsight, it was skin hardening. Skin hardening on my first two fingers decreased manual dexterity and feeling in my fingers.

 

Since the Raynauds came out of nowhere, it seems that scleroderma came out of nowhere. However, when the other symptoms began I was under a great deal of stress. Whether or not that triggered those symptoms......"you be the judge".....

emmie

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In January 2007 my mum slipped and fell badly down our stairs. A few weeks after the fall her sclero symptoms out of the blue and were aggressive. In June 2007 my father was diagnosed with cancer. The stress of my fathers illness caused mum's condition to advance at an ever increasing rate.

 

So for my mum, the initial trigger seemed to be the trauma of the fall, but the stress of other illness in the family increased her symptoms even worse.

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Joel,

 

That's incredible that your pulmonologist was able to predict ssc on your medical records. How he figured that is so interesting. I've heard of people developing ssc whose jobs aggravated some form of pulmonary illnesses, such as coal miners, asbestos removal and any type of work involving inhalation of a foreign substance. Thank you for sharing your experience. I hope you are receiving the best medical treatment and feeling much better these days!

 

 

ShawMJ,

 

Common household cleaners, i.e. bleach, ammonia, oven cleaners, etc. used on a daily basis can have an adverse effect on the body causing various illnesses. I wish the maintenance/housekeeping industry would consider some form of mouth and nose protection for their employees. After my diagnosis withSD I've become sensitive to the smell of chemicals. I can't be around any strong chemical. I agree, we have to take it one day at a time and it could always be worse! You have a great outlook on life! Stay well!

 

 

Emmie,

 

I also had the typical "sausage" fingers with raynaud's in the beginning. I've learned that people withlow to zero stress can develop SD. I'm amazed at the variations and differences in everyone's experience with SD. I'm also impressed with the strength and tenacity demonstrated here and believe we can learn from each other's stories. Thank you for sharing your experience! Wishing you the best of health!

 

 

Webby,

 

I am so sorry to hear of your mom's fall and your dad's diagnosis of cancer. To have both parents develop illnesses within a one year period can be devastating and overwhelming. I will keep you and your parents in my thoughts. I hope they are getting the best medical care and treatment and are on their way to recuperation. Stay strong and be sure to take time to care for yourself!

 

Hugs,

Razz


Live well, Laugh often, Love much

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I did forget to mention that I suffered with bowel problems from the time I was a childThe other biggie was that I had endimetriosos (sp,).For me it was torture and after having my last child at 30 had a hysterectomy.It was the best releif I ever had until I discovered that it was genetic and sure enough my youngest daughter was diagnosed with it a few years back.So it goes on and on-anyway someday we may be able to say I once had diffuse sd,fibro,herniated disk,peripheral neuropathy,sjogrens and all the other stuff,but now they found a cure and I'm well now.That is something to look forward to.I hope it happens in our lifetime.Hugs to all.Mary

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Thanks Razzberry.

 

Sadly Dad is no longer with us (i made a type in my last post he was diagnosed in June 2007, which was AFTER mum's fall).

 

I am taking Mum for another visit to the Royal Free Hospital in London on thursday. Mum's breathing is really bad now so we're hoping for bosentan, or some other PHT treatment. She is taking sildenfil (viagra) at the moment, which is helping a small amount. Fingers crossed!

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Webby,

 

I'm sorry to hear your dad passed away. I, too, hope this medication helps your mom's breathing.

 

 

Razz


Live well, Laugh often, Love much

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