MS and Vibrations

MS and Vibrations

I Feel Like A Cell Phone No One Will Answer

My Multiple Sclerosis has been really active for the past 1 ½ years with the last several months being the worst relapse in several years, since before Lemtrada. 2015 brought on four relapses then starting the last week of December to the first week of January, I have been in a continuing relapse.  To remind you from past posts, my first treatment of Lemtrada started in 2006, second in 2007, third in 2008, 4th in 2013, and 5th in 2014. Yes, I have had 5 treatments, but unfortunately the last two I received my body didn’t respond. In January of 2015 I began treatment with Aubagio and remained on it until three weeks ago when I started Gilenya. A MRI is June showed active new lesions on my spinal cord in my neck, which was the only place pictures were taken. I’m sure if an MRI had been taken of my thoracic region or even my head, it would have shown new lesions there as well.

Nobody knows your body like you do and it is the same with me. I am so tuned in to what my “norm” is that toward the fall of 2015, it became clear (to me), that Aubagio was no longer working. Unfortunately, it took my doctor a little more time to reach this conclusion. With all the different symptoms present since January, almost all of them were the generic one’s that go along with a relapse for me; fatigue, increased pain, muscle spasms, stiffness, body weakness (all over), problems with bladder and bowels, cognitive issues, etc. I felt like I had the worst case of the flu except no fever, cough, or chills. There is one symptom however that is new to me, which continues still today while the other symptoms have lessened somewhat and it is total body vibrations. YES VIBRATIONS! I feel like a cell phone that no one will answer and it happens all over my body. There is no pain or discomfort but only annoying because it doesn’t stop. Exercising and movement especially in the water seems to lessen its intensity; but when I am trying to rest or just sit down for a break, it becomes severely noticeable.

Of course the researcher in me tried looking it up on the computer only to notice that most posts were in the comment section of different sites. There were very limited actual published articles about what it is, what is causing it, and what will make it go away. It seemed that everyone who posted their experience or question regarding vibrations in the comments were linked to every disease known to man and most individuals only complained about this presence in certain areas of their body, not a complete all over body experience. When I finally discussed this with my physician, his response was limited not really giving a reason or significance to the problem. He did however order two different medications, Carbamazepine and Cymbalta which together seem to help relieve a majority of the problem. I started a different DMD three weeks ago and decided to wean off these two meds to see if there is any improvement. Unfortunately, after only a couple of days, the vibrations are back in full force. I guess maybe the lesions are still active and my new MS med hasn’t been taken long enough to improve my condition. So my plan is to continue to take these two medications a little longer and try to check my status in a few months. It is just weird that never since my diagnosis have I ever experienced this craziness until this year. Hopefully the sensations will leave soon and there won’t be any more of this fun symptom again anytime soon.

MS Blogger and Multiple Sclerosis Activist shares her journey living with MS, tips for others living MS and her husband, Steve, offers his insight as a caregiver for MS.