There are certain tests that those with MS have to have done on a routine basis. However, I do think some of the tests routinely done for individuals with MS are a little bit different for each person. The tests themselves are all the same, but the tests done are a little different or the schedule of the tests are a little different. I think this is based off of what sort of MS symptoms one has, how active one’s disease activity is, what medications are taken, how comprehensive the patient wants to be and potentially what the results are of other tests. The typical tests that we—we as in those with MS—all have done on a regular basis are generally, blood tests, MRIs, and eye exams.
Blood Tests
As I have noted in other posts, I take the disease modifying pill therapy, Tecfidera, two times a day. Tecfidera is known to lower your lymphocytes, which are your white blood cells. Having lower white blood cells in an average person means that the average person cannot fight certain viruses or infections, but too decreased white blood cell counts for those with MS taking Tecfidera means you are at risk for Progressive Multifocal Leukoencephalopathy (PML). PML is a disease affecting the white matter in the brain, and it is caused by a viral infection at a time when you have too low of a lymphocyte count. PML is a truly dangerous disease that cannot be treated, and once you have it, you really lose all brain activity. Basically, I do everything I can to make sure that this does not happen. And, to limit the risk of getting PML, I have my white blood cell count checked every three months or so to ensure it is high enough to continue taking Tecfidera.
It is important to note that you are really only at risk for PML if your white blood cell count is too low and you have the Polyomavirus JC (JC Virus). Apparently, about half of the population has the JC Virus, but the JC Virus is harmless to almost all of those people. It is only problematic to those with lowered immune defenses (i.e. too low of a white blood cell/lymphocyte count). So, you really don’t need to get tested for the JC Virus unless your white blood cell count is too low since PML is only triggered if the white blood cell count is too low and you have the JC virus. However, my family is extremely worried about PML, understandably so. So, I am one of those patients that wants to be extremely comprehensive. Thus, I have my JC Virus results tested every three months alongside my white blood cell count blood test.
Overtime, I have found out that the JC Virus results are more of an index, so it’s not a yes, you have it or no, you don’t have it sort of thing. It’s all a matter of degree. As long as your JC Virus results are under .15 or so, you are considered to be negative and not have the JC Virus. But, my results over the past three years have fluctuated between 0.07 and 0.14. I am not sure what causes this fluctuation. I generally just keep track of it to see how much it increases by and how much it decreases by. Also, I believe not all of the MS medications cause this concern, but the other ms medications cause other concerns and require other tests. I know some of the infusion medications actually cause individuals to become fully immunosuppressed or immune-compromised, which causes other complications. But, for me, these are the few blood tests I have done in connection with the medication I take.
The last routine blood test I have done every three months is my Vitamin D3. I think every MS patient has this test done, and that’s because, as I have noted in previous posts, Vitamin D3 levels are thought to correlate with disease activity and MS related symptoms. The higher your Vitamin D3 levels are, the less likely you are to have new disease activity and your MS symptoms tend to be more dormant. So, we check my Vitamin D3 regularly to ensure that my levels are high enough to protect me from disease activity and limit my symptoms.
MRIs
MRIs are the single most effective way to determine if you are having new disease activity. MRIs are effective at showing lesions on the brain and down the spinal cord. Lesions are the marks or scars of MS. I used to have MRIs done once every six months, but because I (thank God) have not had any new disease activity since starting to take Tecfidera in April 2018, now my MRIs are done once every nine months or so. This is one portion where doctors can increase or decrease the frequency of your MRIs. So, each MS patient’s MRI schedule is probably a little different Also, once you have a regular baseline of your disease activity shown in your MRIs, you can stop having contrast dyes with the MRIs, which is amazing. MRIs are fully safe and not harmful—except for the contrast, so not having to have contrast makes it so that having MRIs more frequently is not problematic health wise. If insurance would pay for me to have MRIs every three months, I would do them that often, because I like to know what is happening on my insides. The problem is that MRIs are extremely expensive and time consuming, so I don’t get to have them done as often as I would like.
Eye Exams
Lastly, MS is known to truly mess with your vision, and some of the medications we take to prevent MS can affect your vision, as well. As a result, it is important to have a full-on eye and vision exam at least once a year by an ophthalmologist to make sure that nothing has gone awry. They basically check to make sure your eyeballs are healthy, and your vision is not deteriorating. Your neurologist or MS specialist should also do a makeshift eye exam with you every time you see them for a check-up to see where you are at.
Otherwise, any other tests done that are associated with MS, I believe, are likely to be patient specific based on the current circumstances for that patient, but the above tests are what I have done regularly to ensure that my disease is under control.
Always,
Taylor
