In a few of my blogs, and in discussion with many sufferers, it is clear that a sizable percentage of GDD sufferers had developed symptoms of GDD from the first or earlier GBCA-enhanced MRIs and yet tragically continued to undergo further GBCA injections, with each time the disease getting progressively worse. Maybe something like 50% of sufferers fall into this situation.
So the question that everyone probably has is: what are the warning signs that I may have developed GDD from GBCA-enhancement, so I do not continue to undergo GBCA-injections.
In a very recent blog I described also the categories of disease severity (from 1-5), and this prior blog should be reviewed. The severity of disease can escalate from one category to a higher category with continued GBCA administrations.
It may be of value to go back to the beginning of whether this process is a disease or something else. I have called it a disease, and this is the definition of disease from Dorland's Medical Dictionary:
"a definite morbid process having a characteristic train of symptoms; it may affect the whole body or any of its parts, and its etiology, pathology, and prognosis may be known or unknown"
This definition also explains why I have in the description of Gadolinium Deposition Disease limited the number of symptoms sufferers must have to a relatively small number, which are distinctive. I have selected symptoms that appear to be characteristic for disease and which cannot be readily dismissed as nonspecific by opponents of the existence of GDD in subjects with normal renal function. I may in time distinguish between alpha-symptoms, those that are characteristic for the disease, and beta-symptoms, those that occur frequently with the disease but may be seen in other entities or are nonspecific. In the latter category are dry eyes and blurred vision (I will describe in an up-coming blog); and the full range of gastro-intestinal disorders. When there is so much controversy about a disease process, for a large variety of reasons, which I have also previously mentioned, it is critical in the early stages to limit the list of symptoms to relatively few, that many sufferers get, and limit the time frame the disease may occur, even if this early on cuts out a number of sufferers from the category of definitely having the disease. This for example was the evolution with NSF, originally the time of onset of disease was considered from 2 months- 6 months, but with time the range increased from 2 weeks to 2 years. A conservative, measured evolution of disease description is important to maintain credibility.
The above being said then, sufficient warning symptoms of GDD at this early stage must be limited to symptoms that are characteristic for the disease and distinctive, and must for the time being avoid nonspecific symptoms. So dry eyes and blurred vision may at the present time still be too nonspecific on its own, similarly gastrointestinal (GI) disturbances such as diarrhea also on its own does not represent a specific enough feature.
The specific features I have reported on for GDD, are infact features also seen in other heavy metal toxicities, and are metal toxicity symptoms, hence distinctive for GDD, and separate it out from the huge variety of other maladies that may be occurring in any individual.
Here are the principle warning signs:
1. Burning throughout the body, may be localized to one region such as torso, lower arms and legs (including hands and feet), head, or generalized.
2. Tingling feelings, anywhere in the body, but characteristically in the lower arms and legs (including hands and feet). This may be characteristically sharp pins and needles.
3. Sharp boring bone pain and/or joint pain, but in locations where there has not been pre-existent injury or disease. Focal point pain in a rib(s) for example are characteristic.
4. Brain fog. In elderly patients, and others, confusion is not rare in a number of settings of poor health, so alone in elderly patients this is somewhat nonspecific, but in adults 18-65 this may be distinctive for GDD in the absence of other explanations for altered mentation (eg:drug use, febrile infection).
5. Distal arms and/or legs (including hands and feet) abnormal findings of any kind: pain, tingling, swelling, discoloration. This distribution is also characteristic for NSF, and may be more typical for gadolinium toxicity than other heavy metals.
6. Metallic taste or olfactory sensation that persists beyond 1 day, especially if it is beyond 1 week. For many GBCAs this sensation is common for a period of about 10 minutes after the GBCA injection in 'normal' subjects who would be described as Gadolinium Storage Condition individuals. Some GDD sufferers also described a prolonged metallic body odor. Overall this finding seems to be uncommon in GDD, but would be highly specific.
At this point I recognize that dry eyes and blurred vision, head pain, and GI disturbances may be prominent features for sufferers, but on their own alone should not be considered absolute warning signs that no further GBCA administrations should occur. For example the great majority of individuals getting an iv line for any reason develop head-aches. At the same time, cautious note should be made of these non-specific or beta-symptoms, especially if there may be subtle variations of the above described 6 warning symptoms.
So, having any of the above described 6 points, especially if you have more than one of them, at the present time my recommendation is never to get another GBCA administration again. Also useful to drink a fair amount of fluid with a fair amount of that being alkaline water. Hopefully you will be in category 2 or 3, and all your symptoms will disappear by 3 months, and for good. Provided you never get another GBCA injection.