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baileyvan · 6 years ago

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Day 582 Without Answers

Imagine going to sleep every night knowing you have no idea how you are going to feel or act the next day. How much pain am I going to be in? Will I get another migraine due to the tension in my body? Will my emotional state be in disarray just by being alive?

Imagine waking up every morning and the first conscious recognition is the searing nerve pain pulsing through your hands, feet, arms and legs. You peel yourself out of bed, which is getting harder every time, and you stumble to find your medication in hopes that today will be one of the good days where it dulls the pain but not you entirely.

This has become my typical evening and morning routines yet still nothing about it seems normal or controllable. But I don’t want to start this journey on todays problems, but take you back to the beginning. The beginning of the 582 days when things started to fall apart.

It was November 2017, I was extremely busy at work which caused me stress and long work days but I didn’t mind, I was so young and in the beginnings of my newly found career I was willing to push through these long days to get my research done. I noticed that while working I would get these small, almost electrical, pulses through my hands and feet. Didn’t think much of it and pushed on thinking, “maybe it was my posture at work and my normally poor posture in my body.” In about one months time this progressed into my pinky and ring fingers now going numb. And in my profession there is nothing that can be accomplished without the use of your hands. I began getting worried but I just chalked it up to stress and overuse so I spoke with my boss and he tried thinking of things we could do to over come these problems. We had our ergonomics HR person come to evaluate my working posture and make adjustments, didn’t help and the numbness was now spreading further through my hands and the tingling sensations were becoming more intense. This set me off into an almost months long panic attack where all I could focus on were these failings of my body. My mind and body were both out of whack.

So I finally bit the bullet and went to my general practitioner about these issues. It’s not that I didn’t want to see the doctor but I was hoping we could resolve these issues with simple hacks. My GP prescribed me Gabapentin (neurotin) for what he described as a case of peripheral neuropathy, basically nerve death or damage in your peripheral nervous system, but didn’t really give me much else information on what could be going on. But hey I got some meds and maybe it would help! I started taking the medication the next morning, 100mg 3 times per day and let me tell you if you ever need to start this medication, do it on a Friday. Drowsiness is a side effect but the first two days on this medication feels like you have fucking narcolepsy. After the first two days I got my energy back and it was even better than before! The nerve pain was going down but still a dull presence in the background of everything I did and the numbness was less often.

And then the rain hit in January of 2018 and everything fell apart again. It was like the medication couldn’t keep up with the amount of pain I felt. I don’t know what caused what, or what were side effects of other sources of pain but I was now in about a level 8 on the pain scale pain with my neuropathy. It was ranging now from my fingertips to my elbows. My toes to my ankles. The base of my neck through my shoulders. It’s not like any other pain I’ve every experienced, its not like pulling a muscle or getting a cut. The best analogy I could come up with is that it’s like the burning feeling you get when someone gives you an indian burn. You know that thing we did as kids where you place your hands on someones arm and twist the skin in opposite directions? It’s like that but a constant burn throughout those areas I just described. The gabapentin wasn’t sufficient enough so my doctor bumped me up to 300mg 3 times a day. The pain was less but it was a toss up every single day of how bad the pain and numbness would be and it was driving me into a deep (what I now know) depression and anxiety filled state of mind. In January and February of 2018 I called out sick more days than I worked. I laid in bed in pain wondering if it would ever go away and berating myself for all the things I had done that could have caused this. Did I workout too hard for those years? Was my drug use in college what caused this? Am I making everything up and is all of this just in my head? I couldn’t escape these thoughts and I withdrew from a lot of things. From my personal life and friendships, from my work, from my family. Nothing made sense and if I started to talk about it I would just end up in a full blown psychosis of crying and babbling because I had no answers, only frustration with my body and my state of mind.

During this time I also started to notice small differences. I was getting small twitches, in my face usually my left eye and left upper lip. I would get these electrical shocks in my legs when I would lay down at night. I was having an uptick of my migraines (which I will discuss in a separate post cause holy shit I could write a horror novel on my migraines) and now daily constant ocular migraines. The pain in my neck and shoulders (which I now know is spasticity) caused me to purchase new pillows and a new bed to find relief. I had zero motivation to eat or cook and I dropped down to 122lbs, a weight I hadn't seen since my freshman year of high school and I hope to never see again. I was getting word salad (aphasia), placing words in the wrong order as they came out of my mouth or getting stuck on a word and not being able to get my body to say what I was trying to get out. My vision began blurring and I had to get glasses to read or be on the computer. There were so many things happening to my body that I had zero control over and my depression and anxiety had become too much to deal with on my own so they gave me a xanax prescription on top of gabapentin. But I hate the way xanax makes me feel and with my nature of loving drugs I felt like I needed to tread very lightly when taking benzo’s.

This was about the time I realized something was really wrong and I needed to find answers because my outlook on life had become very bleak and my will to make things better was lessening. We were coming up now on Spring and I needed to get my shit together. This is when my GP finally referred me to a neurologist. I do believe I should have been sent sooner, I didn’t actually even get in to see them until August 2018 because of our damn medical system, but I know my GP hasn’t dealt with something like this and so many people would look at me and think “Oh she’s a young healthy presenting adult I’m sure it’s just an emotional thing.” That’s when I learned what a silent disease is and how frustrating it can be. Everything I was experiencing was only viewable by me and I have never felt more scared or alone.

I finally got in to see a neurologist and their first tests were an EMG which studies your nerve conductivity in your body. They stuck needles in my arms and measured the nerves by pulsing them with electrode pads, wasn’t necessarily painful just uncomfortable. They diagnosed me with ulnar neuropathy and ulnar entrapment. Basically the major ulnar nerve that runs from my shoulder to my ring and pinky fingers was being damaged somewhere and that is why I was having so much nerve pain in my arms. They then sent me for my first MRI of my brain and C-spine (the neck portion of your spine) and that was the end of November 2018. Took a few weeks to get the results back and I was eager to see them. They were looking for tumors or lesions in these areas and I knew when my neurologist emailed me telling me she was referring me now to a neurologist who specialized in Multiple Sclerosis that there was something found. I met with the new doctor and she explained to me that they had found an old lesion in my brain that was of decent size. There's a difference between active and non active lesions, from my understanding an old lesions is a site of already de-myelination and an active lesion is a site where your body is actively attacking your myelin sheath and degrading it. So because mine was inactive we had no idea how long it’s been there. She told me it’s a good chance that I am developing MS but that it could also potentially be a lesion caused by something else. What else? Didn’t really elaborate on that.

So I finally started researching MS and I finally felt like I started getting some answers. All of my symptoms are indicative of MS but many other auto-immune diseases can mimic MS so we are currently in the process of ruling out those (things like lupus and types of arthritis) and getting MRI’s completed every six months to see if any new lesions begin forming. I still have very little help in managing the nerve pain, still taking gabapentin and began acupuncture and cupping treatments in Nov 2018 which helps a little.

All of my symptoms are still there and still progressing but until I have a diagnosis I cannot begin any other treatment options. My mental health has gotten somewhat better, I’m in therapy once a week with a psychologist who specializes in chronic illness which has helped me tremendously and I am on a slew of anxiety medications. But every day is still the same, I go to sleep every night wondering if I will make it out of bed the next morning, if I will be able to make it through the work day, and by the middle of every day I am most excited to go home and go back to bed. There are new symptoms and I will talk about those at another time (like jesus I thought fatigue was just about being tired but some days mine is like feeling every cell in your body running at 30% just enough to keep me breathing) but for now I just wanted to share what I have been going through for the last few years. If you are one of my friends or family members, I understand I have been distant and withdrawn from my relationships and for that I am sorry. I appreciate your love and support but it’s hard opening up about this when I have very little answers and a poor frame of mind most days, but thank you for continuing to love and support me through this.

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