I figure we were very overdue for an update but as you’re soon to read, life threw us some curveballs. If you don’t want to read this lengthy monologue, then all you need to know is I am still twitching, and they could never figure out why or how to treat, BUT all testing is supportive that whatever is going on is nondegenerative meaning I can move fully and I’m not losing my strength or function etc. and quite honestly, I’ve just learned to live with it because I don’t really have any other choice. Also, there is a rainbow at the end of this story.

As a refresher: I had a possible bat exposure and received Imovax 10/2019 and had muscle twitching in my left foot (pinky toe jumping) that started less than 48 hrs after receiving my first shot. I received the second shot and immunoglobulin but then stopped the series because the twitching (which I was told was nothing) worsened and ascended immediately after the 2nd injection. It looked like there were worms under my skin, and it made my fingers and toes jump too (fasciculations and myokymia). I saw a neurologist who told me it probably was a vaccine reaction worsened by anxiety and it should go away but agreed to do further testing. EMG done 11/2019 was normal. I continued to twitch for months after, and he agreed to do another EMG and an MRI without contrast of the brain. Both done 5/2020 and came back normal. Well, 6/2020 comes along and my husband and I were exposed to covid and since this was still beginning of pandemic, it was the strict 2-week quarantine thing. A month later, we find out we were pregnant with our little quarantine surprise. (Come to find out all the supplements I was taking to help with my neuro symptoms are the same supplements that make you super fertile). Neurologist felt there would be no risk to the baby as my symptoms had been relatively stable for several months at that point, just migratory twitching all over my body. My twitching did not get better or worse during my pregnancy, it just stayed the same. I did suffer from some vasovagal syncope (passing out) but could control with drinking more water and eating more salt; this is also an issue I had (rarely though) before I had vaccine reaction. The only time my twitching became an issue during my pregnancy was at my 36-week checkup, they checked my cervix to see if I was dilated. For some reason, that stimulated a twitching storm down there and sent me into preterm labor. I delivered a healthy baby who was actually a good size and didn’t need a NICU stay (I exercised constantly and ate as healthy as I could just in case anything like this were to happen). Of note: I still twitched in my legs even with my epidural. Since then I’ve been loving mommy life with my sweet baby who has definitely been the rainbow to our storm. Postpartum bloodwork showed I do have a +ANA but I’ve had that in the past with a full workup by rheumatology and they never find anything, so that I will continue to watch. I also found out I have a MTHFR genetic mutation which I’ve seen several other members on here mention as well. I also had a DRD2 mutation which I’m curious if anyone else has checked as well.

I still twitch every minute of every day, but I really don’t notice it unless I focus on it, and it doesn’t keep me from being able to do anything. A few interesting things that have happened though: I contracted HSV-1 (cold sores) and because it is a nerve disease my nerves reacted very hypersensitive. I woke up with a fever, face tingling, feeling like my arms were vibrating, and crazy intense twitching all over my body. When the sores appeared it was apparent what was going on. My MD said that was a very atypical presentation but not surprising given my underlying neuro issues. I then thought I would react that way every time I got sick. A few months later I got a 24-hour stomach flu with high fever, body aches, chills, the normal stuff etc. What was interesting was that with this illness my twitches completely STOPPED. For the first time in this 2+ year journey they stopped for about 3 days. Then as I steadily got better, the twitches steadily came back. The same thing happened again when I caught the inevitable covid last month. I am unvaccinated (due to my past vaccine reaction) and thankfully my covid course was very mild. The twitches didn’t completely stop with Covid, but they were pretty darn close. And same thing, as I got better the twitches returned. My theory is that whenever I get sick my immune system gets turned on to fight an actual invader and stops attacking my own nerves, then when I get better it’s like “Ok, let me go after those nerves again”. My hope is that my nerves are not getting damaged in the process. For this reason, my PCP wants me to see my neurologist annually for routine MRIs (neurologist felt 2 EMGs was good for a legit lifetime so no need for those again). I did have an MRI of brain, neck, and spine 6 mos. ago, was told all was clean. My brain had one area of T2 that my neurologist was not concerned about because it was unchanged from previous MRI (though they didn’t even report it on the read) and believed it to be artifact from the imaging (He described it like seeing red eye on a photo).

Whatever the reason, the battle remains the same. I still fight this twitching battle every day, and the anxiety related to having an unknown and untreatable condition caused by vaccine that was supposed to help me is extremely frustrating especially being a healthcare provider myself. I still worry about what if my MRI and EMG will eventually show something, or if something is being missed like MS. I still worry if someone else on here has a similar path like mine, but they never got better or got worse. My hope is that most people stop reporting their symptoms on here because they get completely better, and I hope to one day report the same. But at least I am pain free and functional, and I take that as a win.