So, a (rare) side effect of the medicine I'm on, Tecfidera, is Progressive Multifocal Leukoencephalopathy (PLM); a deadly brain virus. However, when they did the trials of the drug only a handful of the hundreds of thousands of people taking it got it. However, me being the hypochondriac I am, I was sure I had it. So much so I made an emergency appointment with my neurologist because I was sure I was about to die.
I called a few weeks ago and was able to get in this week to see my neurologist and when I told him why I made the appointment he quickly tells me,
"Yes, you have PLM." followed by a smirk and then laughter. He is a good doctor who likes to play with his patients. He then went to reassure me that no, I do not have PLM and gave me the numbers of those who got it from the trials. I was worried because some of the symptoms I have mirrored the virus however they are also similar symptoms of MS, just worse. He continued by having me do walking and reflex tests. I told him what I'm dealing with and then he said they're all MS symptoms and said what my biggest problem is, is anxiety. He reassured me that I'm not dying from the meds and wants me to continue with it.
Whew, I'm not dying, at least not yet. I'm still dealing with the weakness, soreness, dizziness, and all other MS related problems but I'm surviving. He said it was even too early to see if Tecfidera is working and wants me to wait until November to get an MRI because I haven't even been on the meds long enough to know how it's doing. So that was a relief. Though he did break it down for me that with this medication purpose is, it's not to reverse the demyelination of my central nervous system but to stop its progression. Though my body can repair itself to some extent the medicine can't do that.
however, along with the physical problems of MS, there are also many mental issues. Depression and anxiety were not much of an issue for me before. Sure, life, in general, can be tough but I was always able to handle it (usually with Oreos and ice cream mind you). But now I'm battling high depression and anxiety, so much so that I saw a psychiatrist a few months ago and he put me on some meds. And yes, they are working but I still deal with the continuing mental health issues. Many think "well sure, it's tough to be diagnosed with a dishabilitating disorder like that" but it's more than that. How MS affects your brain can also affect how your hormones act. The releasing of dopamine, endorphins, and oxytocin to name a few are interrupted. And just being diagnosed in the last seven months, not having time to learn how to cope has really just not helped me to learn how to deal with the mental aspect of it.
My doctor thinks though, a lot of my physical issues are MS but also he thinks I'm dealing with a lot of anxiety and that's why I thought I had PLM and dying. What this means is, it's going to be a long journey.
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