Condition Update
I need to give a little bit of backstory for some perspective. There are a couple of regular tests that I must undergo to determine how my multiple sclerosis (MS) is progressing or regressing. First, there is the MRI or magnetic resonance imaging. In order to confirm my initial MS diagnosis, I was given two different MRI’s, one for my brain and one for my neck. I needed to get these in two separate sessions as the technicians needed to perform scans with and without contrast dye.
The results of the MRI for my neck initially scared my neurologist into thinking that I had a tumor on my spinal cord. It wasn’t that, thankfully, but just a very large lesion (one indication of a possible MS diagnosis). The results of the brain MRI showed that I had many lesions on my brain which, along with the results of a spinal tap, confirmed my diagnosis of MS, or relapsing MS in my case.
I continued to get MRI’s done on both my neck and brain every six months for another couple of years. After that time, my doctor wasn’t requiring the need for any more scans of my neck, just my brain. The MRI’s have continued to this day, with them being scheduled every 8 to 12 months apart. The past few scans have been very promising with little to no new activity being detected. This is a very good thing.
The Game Changer
The other testing that I have done constantly is blood tests. If you’ve read a couple of my other articles (How Did I Get Here??? & It’s Treatment Time!!!), you know that I’m on the drug Tysabri for my relapsing MS. Like with many drugs, there are inherent risks involved. With this drug, there is the chance that I could develop something called progressive multifocal leukoencephalopathy or PML. It is a rare and often fatal viral disease that affects the brain and its function.
One of the contributing factors that can put me at risk for developing PML is if I’ve been exposed to the John Cunningham virus (JCV). It is a very common virus with between 70-90 percent of people in the world having it. For most people, they are unlikely to experience any kinds of side effects. However, for people who have MS and are taking Tysabri, the risks are much greater. Because of this, I have to be frequently tested for the presence of JCV antibodies. The higher the amount of antibodies, the greater the risk I could possibly develop PML.
Before I was officially prescribed Tysabri, my doctor signed a set of special blood testing orders that I had to take to a local Quest Diagnostics for fulfillment. It’s a relatively simple test checking for one specific thing, so no type of fasting was needed. After a few days, the results came back as NEGATIVE.
Now, there is a scale when it comes to the actual test results to determine a NEGATIVE, INDETERMINATE or POSITIVE test. For NEGATIVE, the test results are <0.20; for INDETERMINATE it is 0.20 – 0.40; for POSITIVE it is anything >0.40. None of these numbers have any specified units, just the numerical value itself. My initial baseline number was 0.17, which put me in the NEGATIVE category. This was good news, so my doctor signed off on my prescription for Tysabri. For more details on a typical treatment, check out this article.
From this point forward, I would be tested for JCV antibodies around every six months. I continued with the NEGATIVE tests for a good 3-1/2 years. In December 2017, my results came back at the extreme low end of INDETERMINATE at 0.20. My doctor was not too terribly concerned with this number because it was indeed so low and I was making such great strides while on Tysabri. We decided I would stay the course, but JCV testing would be ramped up to every four months going forward.
My next couple of tests came back NEGATIVE again, so we were all pleased. The antibody testing was still to continue every four months. My next one in January 2019, also came back as INDETERMINATE again with 0.20. I had a quick turnaround for the next test only a month and a half later and that one came back at 0.28. There was a bit of concern at this point because my results made quite a jump in such a short time. We started looking at other possible forms of treatment at this point, just in case my numbers continued to rise. The next four subsequent antibody tests came back at 0.22/0.22/0.20/0.20. Things seemed to be settling down to where they were before so we kept everything at status quo for the time being.
Keep Moving...Nothing to See Here
I’m extremely happy to report that my most recent test has come back with a NEGATIVE result of 0.14. That is my lowest number in almost four years. I’ve not heard back from my doctor’s office as of yet with the results, but I saw them on Quest Diagnostics and I was overjoyed. I can only imagine we will be going along, business as usual, for the foreseeable future with my treatments of Tysabri.
I’ve got a theory as to why my JCV antibody results came back so much lower this time around. I’m guessing that it is due to the current COVID-19 pandemic that is still ongoing in the U.S. and around the world. Lisa and I have not really been going out anywhere unless we really need to do so. We were always kind of homebodies to begin with anyway; her working from home and me in my workshop in the garage. We used to go out to a local trivia game at a restaurant near us on Thursday nights, but that’s been out of the question for quite some time. Other than my occasional trips to the lumber yard, Rockler or the local home centers, I haven’t really been out of the house all that much, other than for my regular exercise around the neighborhood and scheduled doctors appointments. Whenever we go out anywhere, we are always careful to wear a mask, not to mention that most businesses require them for entry around here anyway.
Whatever the case may be, I’m feeling pretty good, and my MS has been under control for quite some time now. I actually have my annual physical with my primary doctor in a couple of weeks, and the early blood test results came back pretty good. I’m in overall good health, so for now, life is good. Going forward, I’ll be sure to provide more frequent updates on my condition, should there be anything of note.
