This is a question posed by a parent of a sufferer. This is a diagnostic dilemma that is not uncommonly encountered: are the symptoms experienced part of the original condition (MS, VHL, etc) or post-some other treatment that has occurred (back surgery, even as part of treatment for another condition). I also mentioned this about Fibromyalgia, a diagnosis that many GDD patients are labelled with.
I think the surest way to find out is to get one-time chelation with Ca-DTPA, the best provocation agent available for GDD. If the symptoms get worse (Flare) then they have GDD, if they don't, the individual does not have GDD. Recognize ofcourse that one can have symptoms of GDD coexistent with symptoms of MS or other diseases. So symptoms that get worse (or new GDD-specific symptoms develop) are due to GDD, other symptoms that remain unchanged, related to the other ongoing process (MS, back surgery, etc).
If a person has had many MRIs with Gd, they will have an elevated level of Gd in urine as you describe, even if they don't have GDD but have GSC (Gd retained in the body but not sick from it). Also not so well appreciated, provocation with Ca-DTPA (and any of the other poorer provocation agents, I don't list them because I don't want them used) will result in elevated urine Gd both in GDD and GSC patients.
So how can you tell them apart?
GDD patients should always experience a Flare reaction, and GSC patients should not (unless they are a forme fruste or pre-GDD) with provocation with Ca-DTPA. So I need to see a Flare. In some patients Flares can be completely unbearable. Because of that I always would use an extended hypersensitivity protocol in provoking patients - I need to see a Flare to confirm GDD, but don't want it to result in massive symptoms.
We obviously do this here, but no reason it cannot be done at other centers - but crucial they use an extended hypersensitivity protocol.
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