Internal vibration with "nerve firing"

Posted by brayimee @brayimee, Aug 2, 2020

Hello everyone! I am so very happy to have found MayoClinic discussion boards.

My doctors are becoming very stumped on my case and I am becoming more hopeless as to them finding the issue. I am a 41 one year old mother of 5 and was incredibly active with weight lifting, HIIT workouts, very active in my home and with my kids. One day in early April, I just stopped working. This has taken a huge toll on me and my family as I am resting 90% of the day as to stay comfortable.

my story is long, so I will shorten it for a quick read. about 5 months ago, the left side of my body decided to cause me major issues. I feel like it completely shut down. I get terrible internal vibrations and when they stop, I feel this strange release and I get different nerve pains in my left side and right glute. Following these "episodes" my legs get so terribly weak (sometimes overall weakness), I feel like I am going to fall and my bowel and bladder continually become disrupted. I started to monitor my pulse during these episode and see that much of the time they work together somehow.
**An example: I will go up my stairs and my heart rate will Increase to 150 and I will notice I am also having an internal vibration. When it stops, I feel this flow through certain nerves, my legs get very heavy and weak, I have had numbness/tingling, and sometimes I get an urgent need to urinate or I start feeling my Bowels moving and making noises. I told many doctors I feel like something is misfiring, pinching nerves or causing vascular issues, but no one can find anything. I feel the best when I am laying down on my back and just resting. I use tennis balls along my spine to try and help pass gas (I feel like my intestines shut down constantly). Many times when I am just resting, my pulse will climb and I will start feeling all the nerves sensations and weakness setting in. The vibrations happen all day and wake me up in the night even on medication. Its a continuous cycle all day everyday and it's so very odd. I admit it gets me down going from incredibly fit and healthy to laying in bed, having bowel issues, bladder issues and very weak legs.

I'm looking to connect with those of you who have any suggestions or knowledge on my particular issue.

I had a battery of tests thus far : 2 CTS with contrast, Blood work, urinalysis, Thoracic MRI, Brain MRI (Pending results), ultrasound, HIDA scan, wore a heart monitor for 2 weeks, ECHO, 2 EKGs, Endoscopy, Multiple X-rays, Lumbar MRI (pending), I am in PT and seeing a Chiropractor, vaginal ultrasound. I am sure I am missing something, but I have been scanned pretty thoroughly.

Findings: 2 hemangiomas T1 & T11( where I get back pain), PACs, SVTs (Never have had heart issues), bochdalek hernia ( 1st CT, 2nd CT didn't show).

Specialists/Doctors: Cardiologist, GI, Neurologist, OBGYN, Primary care doctor, PMR doctor, Physical therapist, Chirop

Thank you for reading!!

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Your story is identical to my own. Beginning to end. Except Im a man. I also lifted weights before it began. Is your left foot normally just a little numb?
Its an emergency for me. Doctors can't help. 3367819931 text first

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I tried benzos at first hoping it was psychological. But they have little influence over the vibration. Pain meds won't work either. I stopped taking blood pressure medicine because I was having allergic reactions to everyone prescribed.

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@austincrs

I tried benzos at first hoping it was psychological. But they have little influence over the vibration. Pain meds won't work either. I stopped taking blood pressure medicine because I was having allergic reactions to everyone prescribed.

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Hello everyone,
Did someone find out what those internal vibrations are? I find myself a lot in this description.

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@rwinney

@brayimee Aimee - I feel you and am here for you if you need to vent, cry, rejoice or share your health escapades. Please know that I do understand alot of what you are going through emotionally and some physically. Try hard to not beat yourself up over being less of a mom and focus on what you still can do for them...love unconditionally. This is temporary and your husband is a good man telling you such. He sounds alot like mine. I'm happy you have a solid support system. Now, the rest is medical and you will get to the bottom of it. Sounds like you are well on your way! 💪🏼

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@brayimee how are you feeling now?

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Hi there,

I am having the EXACT SAME SYMPTOMS. I can’t believe what I’m reading, it feels like it’s me writing this! It’s goin on a year and half of this with multiple scans and doctors and nothing coming up. I feel so damn hopeless, and like nowhere to turn. Have you gotten any answers???

Thank you!
Dina

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@austincrs

I tried benzos at first hoping it was psychological. But they have little influence over the vibration. Pain meds won't work either. I stopped taking blood pressure medicine because I was having allergic reactions to everyone prescribed.

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@austincrs do you do any exercises, stretches or follow a home exercise program? If you do is there any relation to the nerve issue after activity?

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@dina730

Hi there,

I am having the EXACT SAME SYMPTOMS. I can’t believe what I’m reading, it feels like it’s me writing this! It’s goin on a year and half of this with multiple scans and doctors and nothing coming up. I feel so damn hopeless, and like nowhere to turn. Have you gotten any answers???

Thank you!
Dina

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@dina730 do you do any exercises, stretches or follow a home exercise program? If you do is there any relation to the nerve issue after activity?

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Of course I am discovering how many different symptoms and circumstances can mean all sorts of diseases or disorders. I was recently diagnosed with MOGAD. Some of your symptoms are very similar to mine but I am 20 years older. It must be so hard dealing with this and having a family to care for. I had no idea there were so many different neuro, auto-immune diseases! Just keep trying. Do you see a neurologist and/or a rheumatologist?

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My story is similar but not identical to yours. A Neurologist saw me and examined me in detail. He said, "I am not going to prescribe you any medication, but I will recommend you to a Neurologist for a follow-up"
I do not wish to prolong this initial note. If you wish I can discuss more at a later time.

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I can feel you there i have had similar probems and have had to have back surgery only to make it worse going on three years now and getting nowhere with doctors tried everything now they want to do a NEUROSTIMULATOR, SPINAL CORD to install because of my back legs feel like i have electricty going through them on occasions it really hurts to walk as i said it might not help you but i can feel you with what your going through

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