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americanmike

What Was The Environmental Spark!

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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

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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.

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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

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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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

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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


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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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

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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)

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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

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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

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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.

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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.

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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


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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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

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