Advice for newly identified Gadolinium Toxicity
The idea that we may have Gadolinium Toxicity from a contrast MRI was news to all of us at one time, and most of us got rather panic stricken once we looked into Gadolinium and possibilities of NSF. And we all are suffering in one way or the other, but we are getting through each day. I had 8 contrast MRIs, and it has apparently affected my nerves as I have been diagnosed with Small Fiber Neuropathy, causing manageable pain in many parts of my body. I am 67 and I walked 2 miles this AM, went to the gym for a couple hours yesterday, biked 10 miles on Saturday and played golf on Friday. So life is good in spite of the negative effects of Gadolinium in me.
So what should you do. if anything.
1. Be calm. (more…)
High Early Urine Test Result
While a test result of 36 mcg Gd/24-hours would be indeed one of the highest we have seen, it is not out of line with the other results reported on in the Retention Study. Look at the graphs and you will see that it is in line for tests in the 5 weeks after contrast infusion. The reason we may be surprised is that it is rare for someone to have a Urine test for Gd only a month after having the contrast MRI. The reason may be that the symptoms are slow to develop or just that they do not figure out the connection between the symptoms and the MRI for along time period.
The small number of test results that We have in that time frame are of roughly the same magnitude. And the other test results indicate that the number will come down very quickly. None of this means that the result of 36 mcg Gd/24-hours is not serious and high. It is, and the patient should take the action that they feel most comfortable with. Unfortunately there are no pat answers or we would not be still looking. The prime reason we collected and reported on the urine tests is so that we would have some factual test results by time-frame after the contrast MRI that people could compare with their results in their decision-making process.
To make this personal, I did not find out about my high Gd levels until 10 months after last contrast MRI and the result was about 1.0. I expect that I would have had a result at least as high as 36 if I had a urine test one month after the MRI.
Pain – what kind of pain.
Let me describe three different types of pain I have experienced.
The first is the common muscle pain we all get the day after we overuse some muscles. It is sort of a dull pain and usually associated with trying to use the muscle we overused. This is not the type pain I got from my herniated disc or the pain I associate with my Gadolinium Toxicity.
The second is the pain that was associated with my herniated lumbar (L4-L5) disc. The was an excruciating pain that was all down my left leg. It was so strong that I went to the emergency room twice for the pain that woke me up in the middle of the night. I could not walk without crutches when it was at it’s worst. This occurred 4 times with varying intensities and length of incapacitation. When the non-contrast MRI showed disc material the size of the end of my little finger bulging out the left side of my spine, the doctor said it was time for surgery. The day after the surgery, the pain was gone ant it has not returned. I am working to strengthening the muscles in my back so that it does not reoccur at another disc.
The third type of pain is caused by Small Fiber Neuropathy (SFN) which I have been diagnosed with. All of the easily diagnosed potential causes of my SFN have tested negative twice. But it can be caused by metal toxicity. So although there is no way to prove this, I am certain it is caused by the Gadolinium Toxicity. In SFN, something causes the very ends of the nerves to die. As they die, the symptoms can be pins and needles, numbness, tingling, and sharp, burning pain. I have sharp burning pain in my feet, my ankles, my right flank, and quite frankly the worst, in my mouth. I take some mild medications to help relieve the pain, but it is there nonetheless. I have just decided to go on with life in spite of the pain, since it will never go away, and likely get worse. So I am very active playing golf, doing my exercises, going to the fitness center, biking, kayaking, painting my house, and anything else that needs done, because I may not be able to do these things someday.
So that is my pain story
The viewpoints presented here include Gadolinium Toxicity news and thoughts about various aspects of living with the effects of Gadolinium Toxicity. They may just be one person’s idea or an experience that happened to them. These viewpoints are important to share, because someone looking at them from a different viewpoint may be able to tie some things together in a way that we did not see.
Gadolinium Toxicity 