Hi guys, it has been a long time and I hope that everyone is the best they can be!
I wanted to share an experience I had with you all, with an new update on my condition, in the case that you can relate!
Have you ever been woken up to feeling like you're in the middle of an earthquake, just to find out that it's you, not the earth, quaking? For me, it started out in the beginning of my diagnosis several years ago with just a sensation that someone was shaking the bed, couch, etc. Then one day I woke upwith a full body sensation—as if I was in an earthquake. When I looked down, my body itself wasn't shaking, but I had the sensation that it was. Very strange, and alarming, as this was not one of my regular symptoms.
The "quaking" sensation seemed to happen most when I was lying down, but I've had periodic movement sensations while sitting down, too. The sitting down sensation is always a feeling like someone is shaking their leg or shaking the furniture. When I wake up in the morning and lay down at night the "buzzing" sensation starts out like electricty running through my body's circutry. However, it isn't painful, just weird.
The quaking culprit
After years of tests and puzzling outcomes, I was finally diagnosed with Primary Progressive Multiple Sclerosis (PPMS). Only 10-15% of the MS population have PPMS, so it was a struggle to pinpoint. The good part - a diagnosis, finally! The bad part? PPMS is quite progressive (hence the name), and steadily worsens. While a person's rate of progression may vary over time, even seeing temporary improvement, the fact is, the progression is continuous and attacks your neurolic functionality. People with PPMS tend to experience more problems with walking and more difficulty remaining in the workplace.
Currently there are no medications that treat PPMS. Like the rest of the deal with MS, I've learned to live with it, and try to be as healthy as possible (thought I don't always succeed).
Many of your have expressed your concern with your own quaking and shaking—I encourage you to mention the sensations to your doctor and/or neurologist immediately. I understand the cloud hanging over your head—the loom or whether it's PPMS, or not. The sensations could simply be a result of anxiety of stress - but either way, it's best to find out and alleviate any of the 'not-knowing' stress that you could be consuming. Make sure to document the sensations—when, where and how you're having them—so you have some back-up when talking with your doctor.
Here are some FAQ's about PPMS from the National MS Society that could help ease your stress in the meantime.
I hope everyone is doing well! Take care and God Bless!
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