Scleroderma Support Group
Scleroderma is a rare, chronic disease characterized by excessive deposits of collagen. Scleroderma affects the skin, and in more serious cases it can affect the blood vessels and internal organs. The most evident symptom is the hardening of the skin and associated scarring.
Previously Dr. Wigley had said I had just "undifferentiated connective tissue disease with features of scleroderma." But today I saw Dr. Virginia Steen, who says I do indeed have limited systemic scleroderma. Dr. Steen was recently named "Doctor of the Year" by the Scleroderma Foundation. Obviously I'm not happy about the diagnosis, but at least I can stop spending money trying to find out what's causing all my strange ills.
hugs and peace
Beth
I have Hashimoto's, Adrenal Insufficiency and Dry Eye Syndrome. On top of that I'm having trouble swallowing and my head feels like it's going to explode. My neck feels hard to the touch.
The thyroiditis showed as inflammation on a PET scan which alerted me to have it checked out. The TSH turned out to have zoomed up to about 7.4 which indicates hypothyroidism. The doc only checked for one of the several antibodies that can cause Hashimoto's, and it was negative. But the sonogram showed a heterogeneity which the doctor who analyzed the sonogram said was consistent with Hashimoto's. Further, I have at least one first cousin who was definitely diagnosed with Hashimoto's.
As for the Sjogren's that's somewhat presumptive also. I have eyes that are so dry that when the car defrost blows in them I can hear them "click" when I blink. A Schirmer tear test showed the tear volume to be about 3, where the normal minimum is at least 10. The ophthalmologist's slit lamp exam showed "decreased tear meniscus." I also have a first cousin who has Sjogren's so bad that his corneas were destroyed by the dryness and I heard he had to have a corneal transplant. I'm dry in other mucous membranes, too, if you get my drift.
As for diabetes, the HbA1c simply says I am at increased risk for it. My Dad developed it late in life. I think he had undiagnosed scleroderma sine scleroderma, which means scleroderma without hard skin. He had the Raynaud's, shoulder pain, GERDS, fecal impactions, early neuropathy, heart trouble, huffing and puffing, etc. etc. and failure of kidneys, pancreas, and liver toward the end. The whole ball of wax except for hard skin. His mother had the corrugated "purse string mouth" of limited systemic scleroderma also.
In addition, I have mildly positive anticardiolipin antibodies, which can be secondary to lupus, or primary, as antiphosholipid syndrome. Technically I do not yet have antiphospholipid syndrome, because I haven't had a major clotting event. The doc prescribed Plavix. as a blood-thinner to prevent such an event.
And lastly, my dad probably also had ankylosing spondylitis, because all of his lumbar vertebrae spontaneously fused together from the inflammation in his spine. That's what it does. It's hereditary too, and I already have some spontaneous fusion of my neck vertebrae showing on scans, so I have very limited neck motion.
There is something known as multiple autoimmune disease. I think one could easily classify me as having it.
Julie, I'm sorry to hear you are having autoimmune symptoms also. Have you been checked out by a rheumatologist? scleroderma specialist? Do you have a positive ANA test? Is the adrenal insufficiency an official diagnosis? and if so, what has the doctor advised for it? Where is the hardness on your neck? Is the skin there hard or tight? What do you mean when you say your head feels ready to explode? Headache? Do you have any Raynaud's?
Raynaud's is usually the first thing that happens in scleroderma, but for me it was preceded even earlier by reflux when I bent over to weed the garden, and the sensation that food lingers in the lower esophagus, and has to be washed down. Then they discovered I had severe obstructive sleep apnea caused by narrowing of the passageway at the back of the throat. For me, Raynaud's came third. Actually, the very first thing that happened to me, starting many years ago was peripheral neuropathy in my feet, and abrupt foot and finger swelling, but my doc says neuropathy's not part of scleroderma. I've read otherwise, however, in authoritative studies, on pubmed.org, dealing with the anticentromere antibodies.
Anyway, Julie, get yourself checked out. It may be a long route to diagnosis, though. My neuropathy, foot and finger swelling started in 1985. The elevated ANA was discovered in 1997 along with rotator cuff problems. All the autoimmune problems really reared their ugly heads badly in 2002, and despite my continual efforts, I did not get diagosed firmly until this week. I am quite sure if I did not have a doctoral degree in a health field I'd still not be diagnosed. I had to tell a doc to order the anticentromere B test after 2 rheumatologists had failed to order it, and a third had gotten a false negative on it. Now, it is repeatedly positive, and actually so high it's "off the chart". It has also stiffened the left ventricle of my heart muscle.
If you do not have skin hardening, it's long time to diagnosis! Start keeping a file of all your lab results, because if you don't have skin hardening, and docs keep shrugging you off, having lots of relevant positive lab reports is the only way you'll finally convince a doc to even start looking at your nail-fold capillaries. It's sad, because that's such an easy test for them to do, but no one but the scleroderma specialists seem to know to do it. None of my first 3 rheumatologists bothered!
But genetics only tells one part of the story and I am also familiar with the markers on the HLA-DR. Another doctor said that I had one (there are several) because I presented with biotoxin disease. Yes I was also exposed to toxins and diagnosed with biotoxin disease as well. This was confirmed with two different labs one that has been used by the Department of Defense for over 20 years.
My belief is that genetics loads the gun and environment pulls the trigger. All of my diseases started after my exposure to gadolinium which is a toxic heavy metal. Each metal that we are exposed to as well as multiple metals exposure are going to cause their own unique presentations and because of our genetics we will each present differently. Mold exposure and exposure to bird or bat droppings are also implicated in many of these autoimmune disorders.
Tell me do you think that environment plays a role in any of your diseases? I ask because other family members in my family and I have a huge family were exposed to toxins and presented with health issues (one sister is mildly mentally challenged from lead exposure and has many health issues) and the ones that were not are okay. And I know a bit about genetics as I am BRCA gene mutation positive but I dont have cancer. And then there is the issue of turning on and off good and bad genes.
http://www.ahrp.org/cms/content/view/18/87/
As for the possibilities of Silica or polyvynyl chloride exposures leading to scleroderm, they may, as you say provide the trigger.
And yes, though scleroderma does not follow strict Mendelian genetics, there are certainly familial clusters of it, and in other cases who's to say that there wasn't undiagnosed cases of scleroderma sine scleroderma present in the family. My father and grandmother were case in point. I have numerous reasons to think they had it even though Dad never got any skin hardening and his mother (as for skin changes) only got the purse-string mouth. I would not have been exposed to the same toxins as my grandmother, for I grew up in another state, and saw her for very brief visits only 5 times in my life.
But here's a theory that I think should be looked into more thoroughly: The chimerism theory, involving a graft vs. host reaction. Chimerism happens when a mother and fetus exchange cells and those cells become a permanent addition to either individual. The cells don't get along immunologically speaking and that sets up a reaction known as graft vs host disease, the appearance of which is very similar to scleroderma.
In fact, graph vs. host disease, also demonstrates the nail fold capillary changes the same as scleroderma. See http://www.ncbi.nlm.nih.gov/pubmed/20222922 . But these people are negative as for SCL-70 and anticentromere antibodies. It makes me wonder if graph vs. host disease from chimerism could be at work in those subsets of patients, diagnosed with scleroderma despite being ACA and SCL-70 negative.
Chimerism could also explain why scleroderma is so much more prevalent in females than in males. A male only runs the risk of aquiring chimerism once in his life: in his own prenatal development. But a female runs that risk and in addidtion to that she runs the risk of acquiring chimerism each and every time she has a pregnancy. And then think of how common it is for the first signs of autoimmune disease to rear its ugly head during a woman's pregnancy. It did for me - just 2 months into pregnancy. Pregnancy is a very common time for autoimmune symptoms to appear.
Here's what Wikipedia has to say, though about Lichen sclerosis: "Several risk factors have been proposed, including autoimmune diseases, infections and genetic predisposition.[3][4] There is evidence that LS can be associated with thyroid disease.[5]"
Well, you did tell us that you have thyroid disease. And this article says nothing whatever about heavy metal poisoning. But it's really unclear as to what causes it. However, I did search pubmed.org (Nation Library of Medicine) for any reputable papers relating Lichen sclerosis and heavy Metals, and came up with zero, zip, nada. Not even a trace of a suggestion. Searched it again for papers relating lichen sclerosis with gadolinium. Again zero, zip, nada. So I really think you can rest your mind about the heavy metals issue.
Julie, you can really get yourself worked up when you do not confine yourself to reputable sources. There are million health stores out there on the web ready to trump up needless worries in order to sell useless "detoxifiers.," many of which can actually harm you, rather than helping.
I will say that a lot of people are being injured with these gadolinium based contrasting agents and you don't have to have kidney disease or the hardening of the skin. Do more research! You're good at it.
I can not answer your accusations but if I were you I would stop trying to defend the medical industrial complex. Almost all industries with the level of arrogance seen now in medicine have come to an end. The internet is the great equalizer and we are going to see big changes in that field. Newspapers, legal, telecom, record companies, the film industries all have a pancake structure now vs. the historically hierarchical structure where you did what the powers-to-be told you and left it at that. And you are part of it whether you realize it or not. By participating in these forums you are giving those seeking answers, the answers. And they in turn can go to their doctor and say, hey you didnt run this test and you probably should or I have this disease can you check it out for me. But the bigger shift is going to be in the biosciences industry and data. Data and a drop of blood and swab are going to be able to tell you everything you need to know about yourself and how to stay healthy. Sure youll always need a doctor now and then but they are not going to be able to give you throw away diagnosis like they do now.
As far as you saying its not environmental well that can be disputed as well. Many of these chemicals for which we are being exposed are showing up in the breast milk of mothers then fed to their newborns and these newborns are developing chronic and neurological diseases at levels we have never seen before. I dont know why you dont wish to discuss the issues and instead want to bash me but whatever. Im probably going to die from the disease I have and its very disturbing that people like you and others want to push the environmental issues to the background and instead wish to suppress the science, that is the environmental aspect of disease and instead blame it all on genetics.
Now you have mentioned Wilson's and Hepatolenticular degeneration. Those are both very much hereditary, and yes, they establish very definitely what overloads of these two metals (copper, and iron) do to a person. I am quite familiar with these, and I must tell you the symptoms of those are quite different than scleroderma.
Thirdly, as nearly as I can tell, you have not really listed to us any pattern of symptoms or signs of scleroderma. Your sclerotic lichen was proven by biopsy to be exactly that and not scleroderma. As for the Hashimoto's that is one of the most common of autoimmune diseases and though it can be associated with scleroderma, most commonly it is NOT.
Yes, Gadolinium toxicity does exist, but the companies that make it have lots of disclaimers on their sites saying that if it is administered to a person who has compromised kidney function that it can (by not leaving the system quickly as it normally would) cause toxicity. But just as in Wilson's and Hepatolenticular Degeneration, the effects of Gadolinium toxicity from known overload in this fashion have been well described. The fault that it sometimes happens is more the fault of doctors who order the test with Gadolinium when they know there are kidney function problems, and the radiology techs that proceed with the testing without questioning the patient about health issues that may involve the kidneys. But of course the MRI dye manufacturers are the ones with the largest pocketbooks, so the attorneys are going after them!
Many patients need MRIs for diagnosis, and sometimes the very best imaging can only be gotten with a gadolinium dye to reveal detail. Because I have MGUS also, in addition to scleroderma, I have been subjected to a great number of x-rays, a couple of total body nuclear bone scans and a total body PET/CT scan. Then add yearly mammograms because I have a spot they are watching, and yearly dexa scans because I am fighting osteoporosis, and that's a HUGE amount of radiation. I seem to recall that the total body PET/CT scan alone was equivalent to about 500 x-rays. By contrast, neither MRI's nor gadolinium are radioactive, so I'd actually choose a gad MRI (any day over a type of scan that would expose me to still more radiation! What I am trying to say is that if used properly there is a need for GAD MRI's and that millions have had them without incident.
Now, lastly, I want to point out to you that this is a scleroderma forum. I'm sure that many of us did not appreciate you insinuating that our disease could be caused by gadolinium or other heavy metal toxicity. It took me significant time and energy to seek out the studies that would show the clear differences between Gad system fibrosis and scleroderma, and thereby reassure our members that this is not something else to worry about. We have enough to worry about without that additional needless worry heaped upon us!
You have sclerotic lichen, and there is not a single authoritative article linking that with gadolinium or heavy metal toxicity. If you can find a reputable, controlled scientific article linking sclerotic lichen with heavy metals or gadolinium, I'm sure we would be interested to see it, and it wouldn't hurt your law suit a bit, for it would not deal with your own personal issues.
As for the medical industry in general, we on this forum are fighting a disease which so far is uncurable, and for many of us will ultimately be fatal. Our hope is that the "medical industry" will hang out long enough against unwarranted lawsuits, combined with this awful economy to find us a cure.
I know you meant well, but please, lets hear no more about heavy metal toxicity on this forum unless you have a scientific article that clearly shows it associated with scleroderma.