Antgeogram, if you have the nailfold capillary changes, you do NOT have nephrogenic system fibrosis. In NSF, the nailfold capillaries are always normal.

Gardener, I may soon have in my possession a study linking scleroderma to metal exposure. What if scleroderma was related to metal exposure? What do you think would be the likely treatment?

You continue to ignore the teaching moment Nephrogenic System Fibrosis has presented to us. For example there are many similarities. Why do you insist it's all genetics when if it were metals that have caused your illness you might be able to do something about your disease? Why, why, why. Inquiring minds want to know.

Julie, I am not ignoring anything. I am remembering the studies that showed that a great number of patients with known nephrogenic system fibrosis were examined, and NONE, repeat NONE had the nailfold capillary changes which are present in about 96% of all scleroderma patients.

I posted the link for this before. Would you like me to post it again? Apparently you did not read it, because you continue to plague with needless worry the people on this site who have already told you their doctors have said they have the nailfold capillary changes of scleroderma. It's not nice.

It is clear to me, and at least several others on this site that you are simply looking for more people to join in your law suit.

I think you're going to be hard-pressed to find a scleroderma patient on this site who has NEITHER the scleroderma-specific antibodies, NOR the nailfold capillary changes. Because usually a doctor who sees no specific antibodies is going to want to see those capillary changes before making a diagnosis of scleroderma.

So here's what I think. I think you should request the powers that be here on this site to make a new forum for nephrogenic system fibrosis. Then you, and any persons who have NEITHER nailfold capillary changes NOR SCL-70 NOR anticentromere B antibodies can discuss this further on that forum if you so choose, and stop worrying those of us who know we have the scleroderma specific antibodies or the nailfold changes which have been both shown to be totally absent from all known cases of nephrogenic system fibrosis.

OMG you are going to ignore that there may be a link between metals and scleroderma.

I'm not looking for people to join the lawsuit. I'm trying to prevent more people from getting poisoned with these GBCAs and I happen to think this disease is teaching us something about scleroderma. They are not telling us the truth about NSF what makes you think they are telling the truth about scleroderma? Why won't you try and find studies that link scleroderma to metal poisoning.

It is not a great leap that each metal will present differently but have similarities. You are a smart woman, why will you not at least entertain this idea especially now with NSF presenting with many of the same symptoms?

Fine, Julie Ann, find me some known cases of gadolinium or any other metal toxicity in which there was nailfold capillary abnormality and/or SCL-70 and/or anticentromere B. I've scoured the net for this, and haven't found any.

Every single acknowledged case report of nephogenic system toxicity that I have found has had complete negativity for all these things, which are otherwise so often positive in scleroderma. In fact I reacently read that nailfold capillary abnormalities are present in 96% of scleroderma patients. So why don't we see any of that in the KNOWN and ACKNOWLEDGED cases of nephrogenic system toxicity, many of which were so bad they were fatal. Hmmm????

"Julie, I am not ignoring anything. I am remembering the studies that showed that a great number of patients with known nephrogenic system fibrosis were examined, and NONE, repeat NONE had the nailfold capillary changes which are present in about 96% of all scleroderma patients. "

It could be that the disease is too new. Most of the first patients to get NSF are dead now and perhaps death prevented the nail fold capillary changes for appearing.

Also you are not getting what I am saying Gardener. I am not saying gadolinium is the culprit in scleroderma; I'm saying other metals such as cadmium, lead, mercury and arsenic which are abundant in our environment are possible causes of cases of scleroderma.

Also, it is plausible that the nail fold capillary changes are the result of long-term chronic exposure to toxic metals and doesn't appear in acute cases such as we are seeing with NSF.

Julie,

You are forgetting, or perhaps you didn't know that diffuse scleroderma can in some cases travel very quickly, with death in less than 5 years in some cases. And yet these patients do show the nailfold capillary changes. And so the appearance of these changes does not seem to require a slow chronic process over many years.

As for other toxic metals, can you find any other case reports or studies showing nailfold capillary changes in cases of known metal toxicities? I haven't been able to find any thing about this happening in Copper and Iron toxicities. Those were the two metals actually mentioned in the article by Rosen, Wigley et al. For example I haven't found any mention of Copper and Iron ever causing skin fibrosis or nailfold changes in people with Wilson's Hepatolenticular Degeneration, and Hemochromatosis, which are conditions in which Copper and Iron are known to build up in the body.

If you can find evidence for fibrosis or capillary changes in those metal storage diseases, please post it here. Maybe Rosen et all later realized this, which is why they did no more research on the matter.

As for other metals, they weren't even mentioned as possibly problematic by Rosen and Wigley's article. And as much as we now know about various metal toxicities, including chronic exposures to them in various occupations, it would seem there would have been some definite data by now showing fibrosis in those various exposures.

I'm not saying it's impossible. I'm just saying it seems very unlikely, and I'd like to see more evidence.

Okay, you're not saying it's Gadolinium causing scleroderma. Please remember you said that. I don't want to have to line up the proof against it all over again. Whew! :)

I think I have spinal involvement because I have burning and pain in my lower back after being on my feet for just a short time. It is the most debilatating symptom I have because when I try and go out somewhere I feel pretty good at first and then I get this pain in my spine and I have to go sit down somewhere. After resting a few, minutes, I can get up and move around a little longer, and then it hits me again and I have to find a place to sit down or I am in so much pain that I can't enjoy the activity that I am trying to do. I also have shortness of breath that hits me after a few minutes of being on my feet so that adds to the back pain. My knees tend to hurt me more when I have to get out of a sitting position from the car or at home from a chair. I have so much I would like to do, but so little I can do at this point.