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What Was The Environmental Spark!


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#1 americanmike

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Posted 02 January 2007 - 08:56 PM

was just trying to figure out what caused people to have their immune system become autoreactive.

I've noticed alot of people had operations, or infections in the years preceding the disease. I myself have a metal post in my front tooth that was broken (basketball injury) up in my jaw. I never did anything about it, my body kind of healed up around it, but its still a soft tender area. Sometimes I feel like it is an abscess that my body just walled off.

I've heard people mention abcesses, metal pins in bones, heart surgery, etc. I feel like foreign material (bacteria, poisons, toxins, etc) seem to launch the body into autoimmunity.

Experiences?? Comments?

Michael In Florida

#2 Shelley Ensz

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Posted 02 January 2007 - 11:19 PM

Hi Michael,

That's an interesting question. We have a very large section of our site devoted to Causes of Scleroderma. Mostly, the cause is still unknown. However there are dozens of possible causes. Some of them are proven, such as genetics in a few cases and environmental toxins in a few others.

See Causes of Scleroderma. Here are some page topics from that page:

What Causes Scleroderma?
Advanced Glycation Endproducts (AGES)
Autoimmunity
—B Cells and T Cells
Cluster Studies (Main Page)
—Cluster in South Boston
Cytokines
Dendritic Cells
Environmental (Main Page)
—Artificial Joints & Breast Implants
—Drugs and Medications
—Infections
—Mercury (Dental Amalgam)
—Radiation
—Silica Exposure
—Solvents
—Vinyl Chloride
Fetal Cells
Genetics
Homocysteine, MTHFR C677T Gene
Hormones and Chromosomes
Interleukins
Molecular Defect-TGF Dysregulation
Natural Killer Cells
Neuropeptides and Substance P
NF-kB Protein
Oxidative Stress, Lipid Peroxidation
Serum TIMP-2
Sleep Disorders
Stress
Tissue Kallikrein
Thyroid
Vascular
Vitamin D Deficiency

Those topics are all available at Causes of Scleroderma.
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.

#3 Sheryl

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Posted 03 January 2007 - 02:35 AM

Michael, It sure would be nice if enough people responded with something strange or unusual that doctors never ask and you were able to spot something and then the doctors would have a starting point to a major discovery.
If little children are getting this disease then it really can't be from many surgeries or mercury or a post in the bone of their jaws. It seems like one major symptom that even the little ones have are the bowel disorders. Could it be something to do with that which, eventually brings on the scleroderma.
With more and more little ones getting it, surely the doctors will start putting their heads together. You wouldn't think it could be environmental if the kids live in different countries or different climates. Keep digging. Keep reading. Maybe one day you will be the person to figure it out. It's not always the doctors that figure things out. You go my friend. Sheryl
Strength and Warmth,
Sheryl

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#4 Elehos

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Posted 03 January 2007 - 03:51 AM

Hi Michael,

I have posted these things before, but if someone missed it, here's the blurb again. Others can probably find things from their past in the list, and will have their fair share to add.

The thing that hits me the hardest is the amount of radiation we're exposed to on a daily basis, and with kids on cell phones, having their faces in computers for hours on end, then TV on top of it all...it sounds like the reaction people that have gone through certain forms of chemo or radiation therapy have had. Since 1994 alone, I can't count the number of x-rays I've had (literally!), in addition to numerous MRI's, CT scans, myelograms, and bone scans, primarily for spinal/cervical damage. 5 times in 9 years I was injected with radioactive dye, 3 times for the MRI's, once for the bone scan, and once for the myelogram (CT scan and x-rays come with that), then more x-rays on top of it all.

The metal installed in my body doesn't help, and there are 2 titanium plates, 4 screws, and a "cage," which looks like a slotted 2" metal tube between the vertebrae. Looks like I got shot (lol). Having 3 bone grafts along with those isn't a quick, easy recovery, but the added stress of having 6 surgeries in my lifetime, 4 were between 1989 and 1998, then the last one in 2003 probably weakened my body further. I already had OA, FSHD (a mild form of muscular dystrophy), and bursitis from childhood then developed lupus in 1982, so I don't believe the surgeries necessarily caused the sclero, it was the reaction of an already weakened body.

My background as an artist and die-hard tomboy doesn't help either, and I've mentioned all those lovely cadmium colors that I used for at least a decade, from paint on my skin to inhaling clouds of pastel dust, soldering fumes and buffing compounds from silversmithing and sculpture, asbestos exposure, getting nailed by pesticides and rolling in yards or fields full of weed killer as a kid. They didn't really understand the damage that could occur back in the 60's, so that was probably the beginning of the end there. I fought tooth and nail against my body for decades to "act young", and still do, but I'm too slow and creaky to be climbing trees these days, not to mention my walker would get stuck in the branches, so at least the pesticides are out of my life now.

How many others have been exposed to toxins they aren't even aware of? The medical world is now realizing how many cancers are linked to viruses, so who knows if certain ones might be investigated for a link to sclero. I'm pretty much damaged goods at this stage, but for the sake of the children diagnosis'ed, I hope something very promising comes up in the very near future for them!

Best wishes to you and your family,
Elehos

#5 Elehos

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Posted 03 January 2007 - 04:00 AM

Microwaves! How could I have forgotten that one!

#6 barefut

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Posted 03 January 2007 - 04:38 AM

I have always suspected ususually high levels of constant stress.

Also pregnancy.

#7 janey

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Posted 03 January 2007 - 04:43 AM

Mike,
I've been in and out of computer chip manufacturing facilities since 1986. Talk about chemical exposure - solvents, corrosives, caustics! For years, teaching this stuff, I use to break silicon wafer to demonstrate the different crystallography - there's your silica exposure. So all of this along with genetics, x chromosomes, stress, the air we breathe and the food we eat - a perfect recipe for developing MCTD.
Big Hugs,
Janey

#8 americanmike

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Posted 03 January 2007 - 05:11 AM

Thanks guys--

It's kind of an overwhelming task, trying to figure out the things that cause scleroderma. Where do you start? I mean x-rays, dental work, microwaves, stress. Almost everyone is exposed to those things.

The studies with twins and scleroderma if, my memory serves me, show that even with the same DNA the chance of both twins getting the disease was very low (10% I think?). That makes me think the environmental cause should be something equally as rare.

I'm sure they are studying it and trying to find out what types of things make a difference. And Shelly thanks for the list... these must be the things they've noticed so far.

For most people these causes don't pose too much risk. It's for those of us with a genetic predisposition to autoimmunity. :(
I think that once you know you have the genetics, then it makes sense to really try to avoid everything on Shelly's list. And for people after stem cell transplant...that would seem to be a group of people that want to really avoid the cause all over again.

Michael in Florida

#9 Sweet

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Posted 03 January 2007 - 05:47 AM

Hmmmmm what a good and perplexing question. I have metal plates and screws in my jaws - 18 screws and 4 stainless steel plates to be exact. (had my jaw broke - oh joy)

I also had quite a few metal fillings, still have one left, I've been having them all replaced over time. Just recently I had a porcelain crown put on, only to notice right before you place it in my mouth that the underside of it is metal! I don't think you can totally get away from it. grrrrrrrrrrrr

Let's see what else - just all the everyday stuff, stress, microwaves etc.

Frankly, I gave up wondering what may have caused it, I just try to live as healthy as I can now and get rid of the obvious stuff.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 Jordan's Mommy

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Posted 03 January 2007 - 05:52 AM

My 6 year old had dental surgery 5 months before I noticed the dark spots on her shoulder. She had steel caps put on her rear teeth where the teeth did not completely grow in. I'm pretty sure they used no mercury, but I will ask when she sees her dentist tomorrow. I have always felt that her surgery has been somehow related to her illness.

Jennifer

#11 Heidi

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Posted 03 January 2007 - 08:12 AM

As far as I know (and I have asked), I am the only one in my family that has an autoimmune disease and have been perplexed by my disease. I have never worked around toxins (other then those that you are exposed to without really knowing it) and do not have any metal in my body. I did get mononucleosis when I was in college and I believe (but who really knows??) the virus laid dormant in my body since that time and then was triggered by A LOT of stress in my life (divorce, new marriage, building a new house). But, as Sweet said, I gave up trying to figure it out a long time ago!

Warm wishes,
Heidi

#12 Gidget

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Posted 03 January 2007 - 10:20 AM

Michael,
Good question. I have been trying to figure out what triggered my disease. I went from being "healthy as a horse" to dealing with this. I feel like I must have come in contact with something "toxic" to have triggered such a reaction. My husband thinks it is 'cause I worked in an office building several years ago on a harbor which had oil barges in an out. This is the same time the Raynaud's surfaced. Somehow, he thinks maybe the Petroleum in the "air" effected me. Personally, I think it was the travel vaccines I had prior to the onset of the disease. I had the Hepatitus combo vaccine and I thought I had the typhoid, however, all my records just show the Hepatitus. I remember after this vaccine I felt like a brick wall had fallen on me and this feeling lasted for weeks. At the same time, I was doing heavy travel to Asia where I was out of the USA one week a month -- so I just attributed feeling poorly to the jet lag. Somehow, I think this is all connected. In any event, I don't understand how a perfectly healthy person can get this. all the best Gidget.

#13 scleroguy

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Posted 03 January 2007 - 12:05 PM

Hi Michael,

I also had quite a few metal fillings that were put in a one time, at age 18.

I have others in my family that have had an autoimmune disease.
Ron

Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.

#14 LisaBulman

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Posted 03 January 2007 - 12:08 PM

Ok let's see.... I was diagnosed about 14 years ago. Raynaud's presented itself a year before my offical diagnosis. No major surgeries... normal fillings in my mouth, tonsils out when I was about 6 and knee suregry in college. But looking back I do remember being sick... alot. Strep throat constantly, ear infections, mono my freshman year of high school, then again my senior year, kidney infections in between all of that. I went to college for 4 years, came home and was sick a few months later. No rhyme or reason... or at least I don't think.
I don't really think about what caused it, I just hope my kids aren't in the same situation I am in.
Hugs,
Lisa
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#15 Vee

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Posted 03 January 2007 - 01:17 PM

Ok, here it is! As a child, my dad used to bring home bottles of mercury, and me and my little brother used to pour it out on the hardwood floors and play with it! He is 4years my junior and doesn't show any signs of sclero, but he IS crazy!
and as for childbirth, My last daughter, born in '95, had a pretty rough entry into the world, and they had a time getting my bleeding to stop or my uterus to "clamp" down after the delivery. That same year, I had my gall bladder removed laproscopically which lead to the titanium staples that are still in my abdomen. My mother also has sclero and was diagnosed one year before me.

Any more questions? ask away. Warm and Happy to you! Vee
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#16 HeatherT

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Posted 03 January 2007 - 01:39 PM

Hi Michael,

I originally suspected my pregnancy as triggering my disease because I was diagnosed only 6 months after I gave birth by cesarean. But after thinking about it, I had carpal tunnel pretty badly in both hands before I gave birth and raynauds showed up briefly either at the beginning of pregnancy or shortly before...I can't pin point it. So, who really knows. I was painting quite a bit before I got pregnant and thought that was causing the carpal tunnel issues, but now I doubt it. I am sure it was the beginning of Sclero. I haven't had any other major surgeries.

I read somewhere that the first diagnosed case of Scleroderma was way back in the mid-seventeen hundreds!

Thanks for asking,
Heather

#17 janet905

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Posted 03 January 2007 - 09:37 PM

Hi Michael,
You bring up many good questions about the cause of this disease.

Don't forget that we all have a very rare disease. Most doctors have never seen 1 case ( or didn't know they were treating a sclero patient). It's normal to want to pin medical problem on dental fillings, vaccines, etc.; it's easy since almost everyone has had more than a few of these. If these were common triggers, the incidence of sclero should be tremendous and equal in male and female. Genetics play the most important role in this disease (hence more females than males). The race of people with the highest incidence of sclero in the world are Choctaw indians; a defective gene that seems to cause this has been identified in the choctaw people. So in other words, a person that is female and 100% choctaw has a higher chance of getting sclero ( and especially diffuse sclero) than anyone else in the world. This is a fact.

I found this out while doing some research on connective tissue and autoimmune diseases before I was diagnosed. I thought this had nothing to do with me ( light brown hair, green eyes ) until I thought about my maternal grandfather who died when I was young. I always thought he looked like an indian. I asked my relatives about this and I was shocked to learn he was 3/4 Choctaw indian. Here was a direct, known link to scleroderma.

I also think stress and hormones play a big role in the activation of the disease. Researchers know these two can alter the immune system. One thing that Elohos brought up is interesting too, is about the virus that causes mononucleosis. It stays in the body for the rest of the persons life and is suspected to cause problems later on in some individuals. Also cytomegalovirus and some other herpes viruses such as shingles can cause some interesting problems as people age. This is an interesting area of research.

I don't know if this had any affect on my limited sclero , but I had an unusually severe case of mono when I was twelve . also had a severe bout of shingles right before sclero symptoms started. It may just be a coincidence but most people in their late thirties don't have serious shingles attacks. could be that the sclero had already weakened my immune system bringing on the shingles. Also interesting is the link between Burkitts Lymphoma and some of these viruses that I mentioned above. It seems like alot people have mentioned lymphoma on this site. I don't think this is a coincidence since burkitts is a rare form of lymphatic cancer.

By the way, these viruses lay dormant in the lymphatic tissue and nerve cells long after the initial infection is over..... food for thought? My mom died of lymphoma, another genetic predisposition? She also was prone to severe shingles outbreaks.

Thanks to all for a very interesting discussion. By the way, my undergraduate degree was in microbiology with concentration on virology, bacteriology, and immunology. I was fortunate to work with some of the pioneers in the field of DNA insertion (like putting viral DNA sequences into bacteria and bacterial DNA into plant cells). Neat stuff! Janet

#18 whirlway

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Posted 04 January 2007 - 12:12 AM

Michael, here is my 2 cents worth. My Great-grandfather was a full blooded Choctaw and his wife 3/4 Cherokee. In my research, I have found that Native American Indians have a greater number of autoimmune diseases than any other ethnic group, and Choctaws have a greater number of sclero than any other ethnic group. I have a couple of aunts and uncles that were diagnosis w/ arthritis, but suspect it was probably sclero, due to similar symptoms, not much info about sclero when I was a kid. My dad was diagnosis with conjestive heart failure and pulminary fibrosis of the lungs. I tried to talk to his dr about the fact that my dad and the Choctaw factor, but he just blew me off. I had symptoms all my life, but nothing serious until after the birth of my 3rd child, and then it hit with a vengence.
That was in '82. I didn't receive a diagnosis until '85 and then was told I had lupus. I think it was '99 that I was re-dx w/ sclero, and have had several more diseases added to my repitoire since then. ;)

P.S. I just got back on line today. I will write more later about my recent move. I never want to do that again. :D
~whirlway


#19 Patty

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Posted 04 January 2007 - 02:07 AM

Great question.
I didn't notice anything abnormal about my health until have I had a total hysterectomy. They took me apart in 3 surgeries so maybe that could be it. Or I had a very hard childbirth also and went from delivering her head to a c sect. Or maybe it was when I worked in a photo lab. Lots of chemicals there. I also worked as a store clerk , touching money all day long. I lived next to power lines for a few years. Was it that? I have fillings. I had dental surgery. I doubt that I will ever know. It would be great to know so I can protect my family form my struggles but I doubt that will happen.

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#20 Sweet

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Posted 04 January 2007 - 06:54 AM

Oh Vee! I remember playing with mercury too! My brother and I would "accidentally" break a thermometer so we could play with it. My mom though nothing of it other than concerned we would cut ourselves on the glass....

wow, forgot all about that. My brother is really depressed and has struggled through life not feeling well, but depression is the only diagnosis he's been given. hmmm Maybe I'll talk with him about this.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)