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What Was The Environmental Spark!


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#21 mimi

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Posted 04 January 2007 - 07:04 AM

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.

 

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#22 debonair susie

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Posted 04 January 2007 - 08:59 AM

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


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#23 spidge

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Posted 04 January 2007 - 11:44 AM

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,

 

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#24 spidge

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Posted 04 January 2007 - 11:51 AM

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,

 

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#25 barefut

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Posted 04 January 2007 - 01:35 PM

I broke a thermometer and played with the mercury too, except it WAS an accident....Pam ;) :lol:

#26 Tara

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Posted 04 January 2007 - 01:53 PM

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.



#27 Margaret

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Posted 04 January 2007 - 02:17 PM

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



#28 dawn

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Posted 04 January 2007 - 04:05 PM

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



#29 dawn

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Posted 04 January 2007 - 04:24 PM

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

#30 WestCoast1

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Posted 04 January 2007 - 05:59 PM

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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#31 Guest_Sherrill_*

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Posted 04 January 2007 - 08:23 PM

This is a very interesting thread, and I can relate to several of the possible reasons put forward.

However, just now I'm not going into it, but wanted to say that many of you may like to read the webpage on the ISN website about The History of Scleroderma

One remarkable point is that Scleroderma was first described by Hippocrates around 400 BC.

And also:
The first clear description of it was made by Dr. Carlo Curzio in the mid-1700's.


I wonder what common points these patients so long ago shared with scleroderma patients of today? Particularly way back in 400 BC!

This page also has a number of items about Paul Klee, the famous artist from the earlier 1900's, who had scleroderma.

One other point......... I wonder if the proliferation we are seeing of new scleroderma cases now comes from there being actually MORE scleroderma around, or is it because they are being diagnosed better? There may always have been scleroderma in the general populace, but it was seldom diagnosed. Instead put down to something like bad circulation, stomach problems, skin problems etc. or all of those plus more. And without the meds to alleviate many of the problems which go with scleroderma, the unfortunate patients often didn't last very long!



#32 Elehos

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Posted 05 January 2007 - 02:13 AM

Hi Sherrill and everyone,

It was more common to use pewter cups and dinnerware made with lead in the 1700's, which came here from Europe, not to mention that the entire water system in the ancient Roman world (and most drinking vessels) were also made of lead. Think of all the cadmium and lead Klee must have been exposed to as well!

I got my first two fillings in 1972, two more between 1980 and '81 and you know about the old amalgams and the debate about replacing them; I had two replaced in 2000 and 2005 and definitely got more symptoms afterwards. That's not to say it caused all the CTD's on it's own--just another trigger on top of it all. And all those dental x-rays! I'm a great night light. A lot of us broke thermometers and rolled the mercury around I bet, so don't feel alone!

And a few more things...two pregnancies of course, then remodeling and inhaling who knows what from a century+ old house, well water (more like ill water) for a few years at two houses, breathing in oil fumes from a dying furnace for two years (the bottoms of the white curtains were black after one winter), but the real kicker I believe was being a low birth weight baby. That's where I believe the trouble started and everything else was icing on the cake.

It seems that we all have a ton of things in common, but since kids are now being diagnosis'ed much more frequently, I believe it's our environment more than hormones or even a virus.

Take care,
Elehos

#33 ssakar

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Posted 05 January 2007 - 04:42 AM

I hate to admit this - but I used to do alot of speed (meth) prior to my diagnosis. My doctor often wondered if this played a factor in my diagnosis of Raynaud's.

Thankfully, I am now drug free!! I still find myself blaming "me" for getting Scleroderma/Raynaud's though. If only I would have lived a 'cleaner' life.......urghhh

Sakar

#34 Elehos

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Posted 05 January 2007 - 07:05 AM

Hi Sakar,

I've never had any desire to use any street drugs, and still have had Raynaud's and OA since childhood. We probably all have things from our pasts that worsened our condition, but there's no sense blaming yourself now--just keep clean like you're doing, and hang around here for info and support!

Best wishes,
Elehos

#35 peanut

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Posted 05 January 2007 - 08:31 AM

Hi all,

Based on my medical history my mom said if it was weird I'd get it, and this was long before I was diagnosed with sclero.

For me: no drugs, pregnancy, cancer, Choctaw Indians or autoimmune diseases except for my grandma's cousin who had lupus. No metal anything in my body and all my amalgams were removed with my baby teeth so they weren't in very long. My last dentist (who I worked for) switched to electronic x-rays with a lot less radiation. And really tons of people get those x-rays done and mercury/amalgam fillings that I doubt it's a cause but maybe an instigator? If you are worried about x-rays find a dentist that uses digital x-rays. They're more accurate and less exposure.

I've had my share of chemical exposure: I may have chewed on a battery when I was a kid (gross, but I didn't know better). As an adult I ran the autoclave at the dentist office, worked with formaldyde-covered plants, and was exposed to other art related chemicals, but this was years after my hands first started turning blue.

It's all so much guessing because our disease is so rare. For me: maybe I had only Raynauds, then years later I went through a patch of anxiety & depression + all that exposure kicked it into full-fledged scleroderma. But who knows?

peanut



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my HMO makes me wear a helmet...

#36 Guest_Sherrill_*

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Posted 05 January 2007 - 10:43 AM

Hi Elehos,

There are so many things which *may* contribute to causing scleroderma! But the fact is that none of them in isolation seem to be the cause. It seems to require something plus something else at least, and maybe even more than that!

OK, pewter and lead drinking vessels, maybe, but in that case why didn't everyone get scleroderma, as they were probably widely used.

Pewter is an alloy of tin with various amounts of other metals in it such as antimony, copper, or lead. The *other* metals I have just referred to are probably the most dangerous. Tin is a pure metal which is extracted from ore, and of course is still widely used today.

Scleroderma is still regarded as a rare disease, and back many years ago would have been even more rare. However, this may only have been for want of an accurate diagnosis. The doctors or alchemists in those times just wouldn't have had a clue what they were dealing with!

Returning to my comments of needing more than one thing to start scleroderma: My husband and I had our own business as commercial greenhouse tomato growers. We did this for 23 years. Of course people now who hear this say what about the sprays? Shock, horror! Well, I didn't do the spraying, my husband did, and we shut up the greenhouse after that for a few days. My husband is absolutely fine, with no signs of scleroderma, so...?

Further more, my husband built several boats over the years, with of course epoxy resin included in their making. This is another *possible* in scleroderma. Shock, horror again! But he's not the one with the scleroderma!

However, I put the 10 years of stress we had prior to me developing scleroderma, as the largest factor for my illness, but once again, it would still have needed another factor as a catalyst to "set it off". This I attribute to genetic factors. My mother, I am sure, has had scleroderma most of her life, and I think her father also had it. But scleroderma was very rarely diagnosed back then. She was told she had "bad circulation". She had/has the worst Raynaud's I have ever seen! She also has always had shocking esophageal, stomach and bowel problems! When she had me she nearly died due to complete lack of elasticity in her tissues! But hey, she's 90 in April, and doesn't want a diagnosis now!

Oh, I almost forgot, my mother is an artist, and has used many types of art mediums most of her life! Just to confuse the issue! :rolleyes:

So that's the genetic factor in my family. As to the 10 years of stress, my brother-in-law contracted HIV, and subsequently died from AIDS. I had a lot to do with him in trying to help him, and believe me it was difficult! His parents couldn't handle it at all and his father had a heart attack at 67 and died a year later from a stroke. His mother then got lymphoma, and died nearly 3 years later. All through this I was very involved. Then my father got cancer and died, and we had a complete change of business, shortly after retiring.

I became ill about 9 months after all this, though I strongly suspect that I was germinating the scleroderma for some years prior. Certainly if the overwhelming fatigue was anything to go by!!

However, I once more reiterate that my husband stayed healthy, although all this was just as hard on him. We "scleroderma-ites' seem to be quite an elite bunch don't we?



#37 barefut

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Posted 05 January 2007 - 11:54 AM

Stress.

#38 Guest_Jennifer_*

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Posted 05 January 2007 - 12:07 PM

I lived at an altitude of 7500 above sea level when I was diagnosed and when I first started getting symptoms. I came down with diffuse sclero after a bout in Mexico. Guess I got ran down or something, who knows. I think the altitude has something to do with perhaps. I know three others in that town, population around 7000, that have scleroderma. There are more, but I know of three.

It's cold there too, which certainly does not help Raynauds. I've been better since moving to Arkansas, but I am actually moving back to Denver in a few months.

Jennifer



#39 Elehos

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Posted 05 January 2007 - 12:23 PM

Hi Sherrill,

When you look at life expectancy rates until the mid 20th century, I think a lot of people supposedly died of "old age" when it wasn't just a natural aging process, but the air and water were much cleaner centuries ago. The metals in pewter weren't good for you, and it was phased out after the Colonial period in favor of imported items--china looked better than dull gray plates for starters. It's also odd to think that you could be middle aged by 24 in the 18th and 19th centuries, but overall life expectancy was lower in those days for most.

No, not everyone got sick, but not every smoker gets cancer, has heart attacks, or strokes either and you know the doctors opinion about that. I mention that because the only ones in my family (immediate and extended) that have had any serious health issues or died young were life long non-smokers. The smokers were all healthy and lived into their mid to late 80's. No one get any ideas here! It's just to point out that while certain people are affected by toxins, some might respond differently.

And if scleroderma was considered primarily a "woman's disease" in the mind of many of the male doctors centuries ago, how many undocumented cases were there?

Best to you,
Elehos

#40 Sheryl

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Posted 05 January 2007 - 12:39 PM

Jennifer, I hope your move goes smoothly. Well, at least you waited to move until after they got most of the countrys accumulation of snow. Is this where your parents and family live? Colorado is beautiful (in the summer) yes siree. Sheryl
Strength and Warmth,
Sheryl

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