I'm such a hypochondriac

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.

Types of Multiple Sclerosis

There are four types of Multiple Sclerosis that one could be diagnosed with. My doctor said I have Relapsing Remitting (RR) but I think it's really too soon to definitively diagnose me within such a short amount of time. With RR MS you'll have an onset occurrence as I did January 2018 where your symptoms come on, last for a little while and then calm down but one will never get back to where they were before. The relapsing part means I will have another episode later in life but it could be months or years later. I should get better from where I'm at now (I hope) but I'll never return to where I was. 80%-85% of people with Multiple Sclerosis have RR MS.

The second type is Secondary Progressive (SP) where after having RR MS for a while you progress to the point where your symptoms don't plateau and go down but you progressively get worse. This is usually later in life. This happens to 65% of people with RR MS. This could be my future.

The third is Primary Progressive (PP) which makes up 10% of cases. Here one just gradually and continually get worse over time.

The last is Progressive Relapsing (PR) where one will continue to get worse with spikes that will subside but they really don't return to where they were. Though similar to RR MS their symptoms are worse and harder to handle. Though only 5% of people with MS have PR.

Here is a good video describing each type of Multiple Sclerosis:



It's been eight months since the onset and though I am not as bad as I was in January I'm nowhere near where I was before the onset. The hypochondriac in me fears PP MS but only time will tell. I now use a cane in the evening because that's when I'm at my weakest, every time I've fallen it was in the evenings and even now my legs will start to give out on me and I have to catch myself.

Though looking back I had slight symptoms that I had no idea were MS and I got over it in a few months so maybe I will get over this and go a few years before the next episode. Again though, only time will tell.