My name is Justin and my body is a major asshole. Normally an immune system is helpful and fights off all of those annoying germs and viruses. My immune system.. Nope! It decided to go all Skynet(Terminator) on me and thinks that I am the virus and wants to kill me. I am a threat to its existence or something like that I guess. Thanks a lot, Multiple Sclerosis!!
Now for the usual blog “about me” info. I have a lovely wife and 3 awesome teenagers that I share this life with. That last sentence has got to be one of the most overused cliches ever when it comes to describing your family right? I was born up in Virginia and now live down in Georgia and work as an IT Systems Engineer.
My writing grammar is horrible and it probably takes me 3 times as long as the average person to write anything. Now that I think about it.. I am definitely not average because I have a skilled killer lurking around the inside of my body looking for some myelin to destroy. I also have a very filthy mouth and am making a major effort to tone it down and keep this blog PG.
How it all started
About 4 years ago I was having some tingling in my hands and feet. I also noticed a really weird electric feeling in my neck whenever I leaned forward and it would shoot down my spine. I went and saw a doctor and it seemed plausible that I had a severe b12 deficiency due to some past medical history. He prescribed b12 injections and I gave them to myself every few days and within a couple of weeks, the issue seemed to go away. Maybe this was my first encounter with this skilled terminator inside of me.. who knows.
One thing that I now know was definitely related, were muscle spasms. At the time, I thought maybe it was just sciatica or something else jacked up with my back. The best way I can describe it is how your body tenses up when you stretch really hard. If I go from sitting to a stand.. My body immediately short circuits and I go up on my tiptoes and tense every muscle in my legs and stomach involuntarily.
Earlier this year(2021) I noticed some general weirdness with my legs and the best way I could describe it was “lack of coordination”. Every once in a while I would take a few steps and they felt heavy to lift and just worked stupidly. We went to the park and I was walking behind and kind of embarrassed because I didn’t want to look like I was trying to be all dramatic. The uphill walk was hard and eventually, I was like.. WTF legs?? really?? I got a cane and started using that around the house until I could get in to see a doctor.
I went to go see a Neurologist and we decided to try the B12 route again. I was doing the injections and it really seemed like it was helping as I was able to walk again without the cane. Within a few weeks, I started going downhill again, so we decided to do injections more often. That did not help and I soon graduated from the cane to using my trusty purple walker(Minnesota Vikings fan).
A few weeks after that, my right leg barely worked and I could not lift my foot or wiggle my toes. I found a new Neurologist and got in to get an MRI, spinal tap, and bloodwork pretty quick. We decided it was best for me to start using a wheelchair and that was an eye-opener. Around this time I started having leg spasms if I tried to use my legs a lot or when I sat down in the chair. One of my legs would just start bouncing up and like I am tapping my heel on the ground. It was usually annoying, but sometimes kinda funny. It would start spasming and I would sit there and talk to it.. “ok, you can stop now.. WTF would you stop!… Thank you”. Right now my legs don’t spasm unless I am really kicking their ass with work.. Like the dreaded “going up a ladder”.
It’s amazing all the things you take for granted in life until you have to see things from a different perspective. It’s an annoying perspective when your face is always ass-level with people in the store. I was used to running around the house and doing things quickly, but now it took 5x longer to do stuff and you have to optimize your workflow to get stuff done more efficiently. I guess having an engineer brain kinda helped in that aspect.
We started reading up on all of the things that it could be. I was thinking that it was Guillain Barre syndrome because of how fast it came on. At first, I was mortified at the thought of having MS. After educating myself on it a bit.. I wasn’t as afraid because it is NOT a death sentence.
I started having some weird itching on the right side of my ribcage that was very annoying. It felt like my skin was ripping, but there wasn’t any visible reason for it. My skin was red, but that’s from all the scratching I was doing. That eventually went away and the itching moved to an area below my collar bone. It made sleeping very annoying because.. who can sleep while feeling like their skin is ripping. Gabapentin helped a ton until it went away.
Results came back.. yep, it’s MS. I have lesions on the brain and spine. It seems like I always gotta go above and beyond with everything I do in my life… Getting lesions is no different apparently. I wasn’t really that upset because I had done a lot of research, but I knew a lot of changes would happen and we would have to deal with them as they came.
The first thing my doctor had me do was a daily infusion at home for 3 days with a steroid. The nurse was cool and showed me how to hook myself up and let me take it from there. Word to the wise.. make sure that the IV line is closed before you remove the empty bag from the holder that is up in the air : ) I grabbed the bag and held it down to disconnect it and noticed my blood was shooting up the iv line towards the bag really fast. Was kinda funny and could have been a bloody mess. I immediately saw results with my walking from those infusions. It got the swelling down in my spine and started my road to walking again(until my next flair up).
That month I worked with my doctor, insurance, and Novartis to get put on Kesimpta. I am fortunate that it worked out and it’s not costing an arm and a leg(yet). If and when that changes.. I will re-evaluate my options. I am a person of science, so decided to give science a try.
The doctor recommended that I not drive for quite a while, so I decided to sell my vehicle since there is no point making payments when you are not using it. I also dropped myself from car insurance.. Save every penny I can! I wear my poor wife out because she is my own personal chauffeur. It’s funny when we go out in public and she is wearing her work scrubs because people probably assume that she is my nurse or something.
Its been about 5 months on this medicine and I am currently walking with a cane most of the time. Sometimes I have a WTF tired day and gotta use the walker, but those days don’t happen very often. The only nerve weirdness I have is on the back of my head. It always itches in the exact same spot on both sides.
I know that life will be ups and downs and I will likely be in the chair again many times. I have accepted that and as a human, I will adapt and do what is needed to make the best of the situation.
With this blog, I plan to share stories, give hope, laugh, and probably bitch and complain when I’m having a bad day.
Finally… Done with my “About” section. Feels like it took WAY longer than it should have to write it.