One of the most informed patient sufferers, in my opinion, took exception to some of the points I brought up in my Will I get NSF blog post. Her points were excellent, and are important to address for the wider community.
1. NSF has more symptoms than I mentioned. Interestingly as I have mentioned in earlier blogs and also brought up at the RSNA/FDA/NIH meeting. NSF has to be looked at again. Maybe it has more symptoms, similar to GDD, and maybe the epidemiology is similar. The difference is that the literature of NSF has been written mainly by radiologists and pathologists (the first authors though nephrologists), and they don't see patients and hence don't know all their symptoms. In the Gad toxicity community, individuals would be much more aware of symptoms than would these physician groups. The first peer-reviewed papers I have written on GDD have been symptom-based, by contrast.
2. I have mentioned in that post and earlier blogs, maybe NSF may really just be GDD in subjects with advanced renal failure.
3. What I did not respond to her, and mention it first here, perhaps the timeline of development of the diseases may be more important than the classification. As we are observing with cancer, cancers are now being categorized into the genetic defect, or other cell properties, rather just simply the organ of origin, the latter has been the classic organization. Because genetic defect determines treatment. When GDD arises, in relation to GBCA injection, or NSF arises, may tell us what components of the immune system have triggered the disease, and hence what must be focused on with treatment. Treatment from GDD arising immediately after injection (and NSF as well) may be different than GDD that arises at 1 month - and also treatment may be guided by the host response - if it is primarily neuropathic or primarily skin burning for example.
4. Also not previously mentioned, NSF traditionally considered to arise from 2 months to 6 months, then expanded to 2 years, and as soon as 2 weeks. Some cases described as arising within minutes- could these immediate onset cases be GDD and not NSF?
5. She also mentioned to me the definitive diagnosis of NSF is with deep tissue biopsy and showing the distinctive type of fibrosis with cd34+ fibrocytes. Ofcourse I knew that, which I know she knew, but mentioned this to make her point. My opinion is that advanced GDD with fibrosis should show identical findings, why wouldn't it?
6. Having said the above, because all GBCAs result in GDD, my opinion is it is likely different from NSF (which only results after less stable linear agents). So I still believe, also considering the time of onset, that GDD is like a combination of acute hypersensitivity reaction and NSF.
7. She also felt I underestimated the severity of GDD - that was not my intention, it can be a devastating disease.
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