Suspecting or discovering that you are Gadolinium Toxic can be a scary time and you may not know what to do. And if you are like others, the journey to manage your condition will last for an extended period of time.
The 11 Tips we present here will make understanding and managing your condition an easier task.
- File an Adverse Report with the FDA through its MedWatch program.
- Do a 24-Hour Urine Test to determine your Gadolinium level. Having Gadolinium in your urine will not get you a Gadolinium-related diagnosis. However, it would provide proof that you retained Gadolinium from the GBCA.
- Get copies of all your MRI or MRA reports and be sure the name of the agent and dosage is included. Request a copy of your MRI or MRA images.
- Determine your kidney function level at the time of your contrast procedure. If you were not tested immediately prior to your MRI, get the results of the last test before it and any performed since then.
- Going forward, request copies of all test results. You might need that information when speaking to doctors or while trying to evaluate new symptoms that develop.
- Take photos of all skin changes or anything unusual or unexplained that happens anywhere on your body.
- If you have skin changes, only have deep tissue biopsies performed on areas of involved skin with changes similar to those seen with NSF. Since the diagnostic criteria are based on findings in NSF patients, be prepared for a negative result.
- Keep a journal or notebook with your symptoms and any other relevant information. As time goes by, you will not be able to remember exactly when things occurred and that information might prove to be very helpful in the future.
- Be your own advocate. If you are informed and can explain your symptoms, you will stand a much better chance of being heard.
- Do not say that you think you have NSF. You will be told that patients with normal kidney function cannot get NSF. Plus doctors do not like patients who try to self-diagnose themselves and you need your doctor on your side.
- Stay calm and take care of your physical and mental health. Having a good support system is very important. You will find people who understand what you are going through, both physically and emotionally at the MRI-Gadolinium-Toxicity Support Group.