Internal vibrations, not sleeping well, stressed out

Hi @nightops Bad pun but those internal vibrations are unnerving, aren’t they? I’m experiencing some right now myself. A few years ago, I had some demyelination of my spinal cord in a reaction to a medical condition. It has since repaired itself with a lot of treatment and physical therapy. But if I inadvertently put too much pressure on that area of my spinal cord, it will send my body into what I call ‘electric mode’ for several days with all over internal trembling. I try to describe it as being filled with carbonated water everywhere or holding onto a slightly electrified object.
Even though I know what it is, it tends to freak me out and I need to rely on my mindfulness exercises until it eases.
MS can cause lesions to form along the central nervous system by damaging the myelin sheath that protects our spinal cords. It’s actually fairly common for people with MS to experience internal vibrations. I found a couple of articles for you that you might find a little more reassuring.
https://www.healthline.com/health/internal-vibrations
https://www.mymsteam.com/resources/ms-and-vibrating-sensations
You have a lot to process right now. Have you talked to your doctor about maybe taking a small dose of an anti-anxiety medication to help you work through some of the stress of this new diagnosis and work?

@loribmt absolutely, and only being a few months into my diagnosis, I’m terrified. Given the results from my run of SoluMedrol, I was hoping for RRMS, but I’m afraid it might be PPMS with all of this. Might be unfounded. My neuro has me on Copaxone, but I’m starting to wonder if I shouldn’t look to something with higher efficacy like Ocrevus.

I truly empathize with what you’re going through. Though my symptoms mimicked MS it wasn’t my diagnosis. It was an autoimmune response to my bone marrow transplant. However, my sister did have MS. She was diagnosed at the age of 50 and lived a pretty normal life until she passed away a few years at the age 84. (Not from MS).
MS treatments have progressed hugely from the time she was diagnosed almost 40 years ago. If you have a neurologist with whom you’re comfortable and trusting, let this doctor do the worrying for you as to the next step.
Recalling my sister’s experience there were some days when she overdid with work or physical exertion, then she would have a tendency to have a flair of symptoms. Anxiety can be a huge culprit in some of the symptoms too.
I’m happy you’ve been talking to others in the Spine group who have MS. Each person’s story is different, of course, but it helps to talk with others who have the same disease. Do you have any local support groups near you?

@loribmt i have a few local family and friends, but no groups that I am connected with face to face. When I was diagnosed I had 3 active lesions, and very little bands in my CSF. I changed up my diet, started exercising, and really got connected back to my faith. Since then I’ve studied and switched up my vitamin/supplement regimen to a daily vitamin, omega 3, vitamin D3 (5000iu), and B Complex, as well as a good probiotic. I thought I was taking all the right steps. Copaxone injections were going well once I learned how to not inject into muscle (that was a hoot). The more I read, the more I wonder if I shouldn’t have started on a high efficacy DMT to start. I’m not sure how much I trust my neuro - he seems like a great guy, but I never thought to ask if he specialized in MS. He suggested Copaxone. Lately I’ve been following Dr. Aaron Boster out if Ohio, and he thinks any neuro recommending a low efficacy DMT is a red flag unless you regularly have bad side effects or are pregnant.

On top of everything, I transitioned to a role where I am now over 2 departments. I’m sure that hasn’t helped, but it’s something that I’ve wanted to do for a long time…I just wish it hadn’t all happened at once. I went from running half marathons, to wondering if I’m going to make it to my 20th anniversary in May.

The timing on some of these life events are just so unfair isn’t it? It’s like we finally hit our stride in life and then there’s these enormous hurdles. Congratulations on the promotion. I can see that would add some extra stress…again, with the timing! But I have no doubt you’ll be making your 20th anniversary in May. That’s a milestone!

Please don’t give up hope. It’s so easy to start feeling helpless and full of despair. We all have those moments but it’s how we deflect ourselves from those thoughts that help propel us forward. I love to see how proactive you are with diet, exercises and research. Knowledge is power and you’re doing all the right things.

I do wonder, like you, if a second opinion might not be a bad thing? Finding an MS specialist would be a good place to start and of course, if you’d like a second opinion from Mayo Clinic…I’m a bit biased but their neurology teams are in a league above.
Here’s a link to the Mayo home page where you’ll be able to start the appointment request process. http://mayocl.in/1mtmR63

How often do you see your neurologist and have followup MRIs?

@loribmt Yes, on all points - and thank you :). It seems like just when I think I’m understanding MS, another symptom pops up and I end up falling back to ground zero.

I may just start an appointment with Mayo, I know it’s up to me to be my best advocate. I appreciate your time and info.

Are you near a major university teaching hospital? If so, you might try them for your symptoms. Also, do not know your age, but possible to go on disability? Are you male or female?
I have a friend who has ms, and she collects disability.
Good luck.

I work for a local university. I'm 43, and fortunately I'm at a 0 on the EDSS. Male, jogging 3x a week, and co-coaching U11 soccer twice a week. Luckily my symptoms are mild - just annoying. Sorry I haven't responded sooner...

Got an EMG done, no CTS 🙁 They say my nerves are doing great, so it's just the MS/peripheral neuropathy. Anxiety has been a struggle in general. Ended up switching to a 3mg dose of melatonin to help with sleep. Last night for the first time in MONTHS I did not wake up through the night! 7+ hours of sleep! Why is it that when you finally do get sleep, you feel more tired? lol... Hopefully this is the start of a great trend.

Good for you !

I, have been having vibrations mostly at night for over 2 years now. Strange insomnia. Almost like in flight mode 24/7. Now having trouble with my digestion. Can’t hardly eat, anything but homemade chicken soup. Anyone else having this? I, had two shots and Covid, twice.