Posted 06 July 2008 - 12:38 PM
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.
Posted 07 July 2008 - 03:38 AM
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!
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!
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!
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!
Posted 07 July 2008 - 05:39 PM
Posted 08 July 2008 - 04:25 AM
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!
Posted 08 July 2008 - 06:56 PM
I'm sorry to hear your dad passed away. I, too, hope this medication helps your mom's breathing.
Posted 09 July 2008 - 02:58 AM
Funny, I kept my first reply short and sweet because it was getting really long winded and I was thinking of things as I was typing (sort of putting the puzzle together in my mind) and if I had kept going it would have been 3 pages long, so I'm going to try to breifly summarize here Lol
Adolecence: Constant strep throat. Always on antibiotics. (doctors were arguing weather or not to remove my tonsils. Never had them removed)
Between adolecense and early teens, extremely unhealthy family life. Very mentally toxic and damaging emotionally and very abusive.
Early teens: Warts on hands. Family life worsened.
Late teens: Anxiety/pannic/agoraphobia along with severe weight loss at first, then severe weight gain and loss of 80% of hair. Also skin dry like an alligator. (odd for a 17-18 year old).
I lived with the weight and baldness for many years before finally getting diagnosed with hypothyroid in my mid to late 20's. Synthroid helped with the weight, but the hair never came back and even got a bit worse over time. (I attribute some of the hair loss to thyroid but most to autoimmune/lupus which was not diagnosed at the time).
Late 30's developed Raynauds. My Dad was very ill and I was back and forth taking care of him while working full time at a high stress job. Also in the interum my mom had triple bypass and was taking care of her too.
Got married at 39 and noticed the tanglestasias after I came back from my honeymoon but just chalked it up to too much sun on the cruise.
Dad passed away December 2006. I felt like I lost the only link to sanity that I had left. I was lucky enough to be at his bedside when he passed, but I remember feeling like I was going to lose it right then and there. When we buried him, I tried to kneel down to put flowers down and could not bend at all. Completely stiff, so this is when the UCTD came on the scene. I just thought I was out of shape and needed to do some stretching or yoga. (yeah right lol)
Work became unbearable as I was in a constant Raynauds attack and my cuticles were destroyed and infected. Writing became painful.
After applying for disability I was told to see a Rhumetologist which is when I was told I had CREST variant, UCTD, autoimmune issues with lupus like antibodies. etc. Saw dermatologist to diagnosed scleroderma.
So, that's a brief as I can possibly make it Lol Sorry if it's super long but it did start IMO when I was young. Just now it's taken a different turn.
Thanks for listening. It was theraputic to put it down in sequence.
Posted 09 July 2008 - 07:17 AM
Ages 7-10 I lived in Okinawa (my father being a Marine officer). Periodically a truck would go by spraying insecticide (probably DDT) throughout the neighborhood. The whole place smelled of the spray. Perhaps a contributor?
I find it difficult to try and guess at causes, since the variables are virtually infinite. So many chemical (e.g.- asbestos) were routinely used. Many common old agrucultural chemical have now been banned.
I spent many childhood hours wading through the creeks and ponds in Okinawa looking for fish and frogs. They were probably full of dangerous chemicals, what with the place having been bombed to smithereens less than twenty years earlier.
I've done quite a bit of furniture refinishing as well as work on cars, so there are more chemicals.
Since my father also had the disease, I'm inclined to assume that there is something genetic involved. Strangely, my two sisters show no signs of autoimmune disease - so in my family it's been only men that get this mostly female disease.
My father was thought to have been effected by the "Agent Orange" defoliant used when he was in Vietnam. He said the stuff fell from the sky like rain. But he already had signs of scleroderma, and thousands of vets didn't seem to be effected...
I think that we have a genetic weakness that can be set off by environmental factors. Some get scleroderma, others might get hypertension.
It's difficult to draw conclusions when there aren't double-blind tests and good statistics to back up conclusions.
Posted 09 July 2008 - 03:17 PM
Most teenagers have issues with anxiety and peer pressures. But you've had more than your share with toxic abuse, ailments, taking care of your parents and then losing your father. You are a beautiful and amazing person! I admire your strength and endurance to persevere through so much adversity! You are an example to everyone not to give up.
Keep that beautiful smile!
Posted 09 July 2008 - 03:46 PM
I remember the mosquito truck too and the noise the siren made warning everyone it was coming. I would close my windows or, if I was outside, hold my breath (that didn't work too well). Perhaps a contributor? Possibly.
That's interesting that the men in your family developed scleroderma. I've also read about our Vietnam vets who, after exposure to agent orange, developed scleroderma. There has to be a connection with the exposure and the scleroderma.
I've concluded that there is no one set pattern or cause for SD. Maybe we can't avoid developing SD if we have a genetic predisposition. What I am hoping for is one cure for everyone. A way to stop and reverse an autoimmune disease.
I agree better statistics and double-blind studies would give us more conclusive answers.
Thank you for sharing your childhood experience and family background.
Posted 10 July 2008 - 01:23 AM
I too, had constant strep throat from youth on. I also remember as a teen, being in the ER for an unrelated incident and the doctor on call being drawn to the tanglestasias and questioning how long I had it. I shrugged it off as birthmarks, as I had them forever. My family life was also a destructive and dysfunctional life as I lost my dad at 15 and my mother didn't know how to deal from that day on in a normal parental role. My skin was always dry and flaky, too much for a young teen. Warts too. The list goes on and on. Seems to be similar signs among all of us.
It is what it is...........
Posted 10 July 2008 - 05:03 AM
I worked with those plus in the other part of the building (not closed off from my side) was "molding" where they made all the plastic parts. I also worked with the cardboard like visors which were sealed with heat & some glue I think...can't recall. And lastly I put together tons of the vanities that go in visors.
Posted 10 July 2008 - 12:37 PM
I was going to mention PVC too. I have great fears about PVC. I almost fear that PVC will become the asbestos of the future. My mom who has scleroderma was the managing director of PVC door and window manufacturing company (as was my father - dad's cancer was also linked to PVC). My mom's doctor has another scleroderma patient ... she worked in the admin office of a PVC injection moulding company and would be exposed to the smell of PVC vapours all day every day.
My feeling is that the exposure to certain chemicals, such as PVC, trigger something in the body and then all it takes is some other stimulus such as severe stress or a fall to really bring this disease to life.
I wish we knew for sure though :-(
Posted 10 July 2008 - 04:02 PM
Posted 10 July 2008 - 04:11 PM
CraigR - My father was a Vietnam vet and it is believed that he was affected from agent orange. He ended up developing non-hodgkin's lymphoma and passed from it in 2000. He was able to receive full military benefits as a result so we were greatful for that, but it was a hard thing to watch him progress with that disease.
Tru/KarenLee - I too had many bouts with strep as a child. I had it so much one fall/winter that I ended up with pneumonia and couldn't take the normal course of antibiotics because I'd had too much with the strep!
Posted 11 July 2008 - 09:45 AM
It's interesting to ponder theory and read all the different accounts people have shared. Would be nice to know for sure one day. At least I hope so in my lifetime.
Posted 11 July 2008 - 03:47 PM
Posted 27 April 2009 - 11:02 AM
I'd asked my dentist about whether removing the mercury amalgam fillings that I have was a good idea or not. He said that when left in situ the fillings are stable and unlikely to be contributing to on-going exposure, but that removing them would provide new exposure because of drilling them out. I didn't say that very well, but the gist is there. I've left mine until they've needed to be replaced because they're failing due to age. Like most things, it's a matter of personal choice.
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Posted 27 April 2009 - 11:50 AM
A few years ago I had to have extensive dental work done throughout all my remaining teeth. So I opted to have my dentist remove all my mercury fillings while she was in there. That renovation took about a year and a half.
I really can't say it improved my health at all, but my teeth look better. Also, since the party line is that dental fillings do not cause health problems, I was not able to have them removed by telling my dentist I was concerned for health reasons including my mercury allergy. However when I said I wanted them removed to improve my appearance then it was all systems go.
And after I had the work completed, my internist congratulated me and said it may have been one of the best things I could do for my health. Just a few weeks prior there was some study released which I think loosened her tongue as until then she appeared to be biting it.
But, I do think I've had substantial health improvements due to identifying and eliminating food sensitivities, most especially gluten, which is now finally emerging in studies to be a common issue -- complication or cause -- with scleroderma and many other autoimmune diseases.
I'm also tuberculin positive and have had some environmental toxin exposures. However, I figured there wasn't anything more I could do about being a tuberculosis carrier nor could I wipe out past toxic exposures. But I could remove the mercury (at some risk but also risk of leaving it there) and I could even more safely remove all traces of gluten from my diet.
So, you do what you can, depending on what you or your doctors figure might be possible triggers. I also actively address issues of stress since I want to put mind/body factors in my favor. That leaves me free to indulge in beautiful music, deep breathing exercises, healthful delicious foods, plus art - sewing - craft "therapy".
Since there is still no absolute single cause of scleroderma identified, most of us might be suspicious of a few possible causes but hard put to prove it in our individual circumstance.
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Posted 27 April 2009 - 05:32 PM
I had epilepsy with grand mal seizures from the time I was a baby until puberty. I took tridione and dilantin 3x a day. Thank goodness it went away.
I developed Raynaud's in my early 30's, and in my 40's it went into remission. Of course, I was careful to stay warm, but I never had an attack until after being diagnosed with sclero.
During menopause I had hypothyroidism.
I am not and was not under any stress when the sclero hit. I am a fitness instructor and my diet is excellent. I am not and was not around any toxins or chemicals that I know of. The sclero came into my life disguised first as carpal tunnel, dental infection/arthritis of the jaw, swollen finger joints, and swollen and pigmented feet.
When I thought it was just carpal tunnel, that was taken care of by my orthopedist. My oral surgeon took care of the dental work when I thought it was just dental. But the joints and pain needed further investigation. That's where my rheumatologist came in, and she was right on target with her preliminary diagnosis of scleroderma.
Epilepsy, Raynaud's, and now Sclero. Has it been lurking inside me all of this time waiting to pounce like a roaring lion?
Posted 28 April 2009 - 06:17 AM
I am glad to see this post brought up again because it is a question I still wonder about on occasion. Dental work involving amalgam metal fillings (with mercury) has always been of interest to me since I did have extensive dental work the year prior to my first symptoms. I had a root canal procedure done along with fillings, which I've also read could be a potential cause. I have considered replacing my metal fillings but chose to leave them in because of the cost. Instead when I require additional fillings, I ask for the porcelain/ceramic fillings. I found a dentist who does amazing work within the small confines of my mouth and just had two ceramic fillings put in recently. So far I'm very happy with her work! The ceramic fillings look better, are more expensive but at least I don't have the thought in the back of my mind of possible mercury leaking into my system.
I do make a point to stay away from products or locations with strong fumes or chemicals. When I clean my house, I use a very small amount of a cleaning product. Thank goodness for all the environmental awareness on using healthier substitutions as household cleaning products. There is so much we can learn about living in a healthier environment.