americanmike

What Was The Environmental Spark!

52 posts in this topic

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

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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

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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 with 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 with 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

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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.

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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)

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We were in the middle of a horrible remodel on our house--contractors in jail--money stolen, etc. I also had just given birth to my second daughter. My symptoms started 2 1/2 months after her birth-I was diagnosed one year later. I was perfectly healthy until then.

 

I sometimes wonder if it was all the stress and the pregnancy, but then I wonder if it was something in the construction dust. We stayed in our house during the remodel and the WHOLE house was always a mess with dust. We had the whole house re-drywalled (we did move out for 2 weeks during that process). My daughter always has respiratory "stuff" going on.

 

Mimi

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Hi Mike and Everyone,

I believe the starting of this thread was an awesome idea! No doubt we've all cogitated on this very subject many times over. I have a special friend whose mother had MS. She and I have discussed this a great deal, wondering about the geography of such illnesses.

I have a great commonality with Lisa, in that I too had mononucleosis (age 15), ear infections from young child for years, strep throat at least once/year for 10 years, ceasing at age 28, UTIs (urinary tract infections) several times.

 

I am not dismissing the connection with mercury amalgam fillings, either. My daughter has felt for many years, that these have played an important part in her health. She has been unwell for 15 years... yet nothing ever diagnosed. Her teeth began to literally crumble, she had trigeminal neuralgia (as I also do), which made it impossible for her to eat the days she was affected. As a result, she made the difficult choice to have the remaining teeth pulled and get dentures. Whether it be coincidence, or what... her overall health has greatly improved since taking this action. Now, over the years, she has lived in MT, CO, NV, NE, back to CO and now MO... her sickness seemed to rear its ugly head while in CO the first time. Stress? Possible. She was living with her father and not with me more than 4 mos/year. My problems also began at that time with the unwellness and diagnoses soon to come.

With all of our minds/thoughts melding together, this is such a great topic...thanks Mike!

Hugs to all,

 

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Mike,

 

Read your post and felt I had to reply. I have had Linea Morphea for 20+ years and I know it was original caused by a hit with a bat to my head (accident while playing sport) I had a wound on the spot that would not heal and slowly over time developed morphea, took years to be finally diagnosed.

 

Recently I have developed scleroderma like symptons and have had many tests (still not fully diagnosed) ANA 400. I have had many problems in the last 4/5 years with gum infections and I have one spot that is a small lump in my gum that is always there but only causes problems occasionally its like my body excepts it.

 

( I've had many antibiotics) I have therefore always thought that in my case that my illness has been triggered by infection. How to stop it for me, is the question?

 

I think often there are different triggers for different people.

 

Best of luck to you,

 

spidge cool.gif

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Hi Mike again,

 

Sorry forgot to say that I'm an identical twin my sister does not yet have any sign of autoimmune, we do how ever belong to one of the australian twin studys and I watch carefully for any studies on autoimmue, I'll be the first in line.

Best wishes,

 

Spidge cool.gif

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I didn't read all the responses, but my pregnancy caused my scleroderma. The doctors won't/can't confirm, but I know. My son was born in July 2005. I first went to my primary care physician with the initial complaints in Nov. 2005, but should've gone earlier. I was just attributing everything to being a new mom, tired, hormonal, etc. I was diagnosed with diffuse sclero in Feb. 2006.

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Hi Michael,

 

I wanted to chime in and say that my son (18 years old, with Downs Syndrome/Autistic) has 5 pins holding his Rt hip together. They were put in almost 4 years ago. It's an interesting question even though he has always had 'health issues' because the rheumatologist doctor said last week that since his esophagus has stopped working, he has probably had the sS for a few years. He's been on GERD meds since he was 10 but that is common in kids with Downs Syndrome due to the lack of muscle tone. He has had 8 surgeries for pilonidal cysts, three of them with him being sent home with 'marsupial wounds' that needed to heal from the inside out.

 

I guess finding the cause of Scleroderma is kind of like people trying to find the cause of autism. It use to be 1/1000 kids had autism, now it's 1/166. We have a whole generation of autistic kids. Maybe in a few years, from reading this site and the other Moms that have chimed in, we will have to add a generation of scleroderma kids, too. THAT is a SCARY thought.

 

As for my son, we are STILL waiting for dates for the CT scan and MRA of the heart. I am getting so frustrated with the medical field/insurance company. They are so slow in getting anything done!!! Is this the norm for specialists, such as gastros and rheumatologists?

Take care, Everyone.

Margaret

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We had just moved into an old victorian house in GA that we were renting while my husband finished up at the MCG... it was 6 months later that I realized the water wasn't right! We always used a glass cup to drink from so I didn't notice right away. It wasn't until I went to rinse out a small white plastic cup my oldest daughter had gotten at a restaurant I noticed a slight discoloration to the water. At that point we stopped drinking and cooking with the tap water until it was tested.

When I took it to the Water Department they tested it and a week later never heard from them so I took them another sample. They took it to be tested and again a week later I didn't hear from them. So again I took it to the Water Department and they said they thought I must be joking - I must have gotten the sample from a puddle of water on the ground not the tap water in the house. I told them to come to the house to obtain the water themselves. They did that morning by early after noon the entire front yard and part of the street was dug up to expose the water pipes.

No one at the Water department would talk to me about what was going on - except one of the techs in the yard... I was crying and pleading with him to tell me what was going on. He said when they replaced the water main 15 years ago!! they neglected to hook this house up and it was only receiving water that was being back washed in to the old pipe. I ask them what the water test showed and he said it had everything high bacteria counts of course but high metal counts too. I asked which metals and he said all of them. In something like this, one can't prove cause and effect. I did check.

My youngest daughter has scleroderma, diabetes and celiac, all autoimmune. I think it was the water. How stupid of me.

Her endo. said she believed her immune system is failing, like dominoes. I try not to dwell on the past as nothing can come out of it but I am deeply saddened and at times feel extremely guilty. I picked out the house.

I'm with you Michael, I think it was the exposure to metal... and what ever else.

Take care,

 

DAWN

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One more thing, I recently went to a seminar for parents (the main focus was juvenile diabetes) and the doctor speaking said something that I keep thinking about... he said many think the next world war will between nations but he thinks the next war will be an auto immune outbreak as all the auto immune diseases are on the rise.

 

Margaret, I have recently read a great book about special diets for special kids. If you would like, I can send you a PM with the title and author's name. I love this book it talks about it all - autism, celiac, gut permeability, food allergies, additives to food, etc. - in relationship with kids. 150 Great recipes too.

 

Night, DAWN

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hello~

I have read a lot of posts on this thread relating to pregnancy. I have to be suspicious about that one myself. I feel that I was predisposed...as they say, and the stress of my second child triggered the sclero. Up until then, i was okay.

 

I have also wondered about mercury fillings. I do have them and have read that when the filling becomes old, the tooth cracks and leaks the mercury into the body triggering/causing autoimmune disease.

 

The dentist that placed them there was a very young and talented guy, he had to retire very early because he developed such severe Rheumatory Arthritis in his hands....also an Autoimmune disease! Makes ya wonder.

 

Anyhow....very interesting thread!


*WestCoast*

 

********

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