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Internal vibration with "nerve firing"
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!!
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Did you figure out what this is.
I have strong vibrations in my body and send squeezing energy up my neck and head.
It's awful.
Hi @wesforgione, welcome to Connect. Sorry about your symptoms. I know how frustrating those feelings can be. Have they recently began or long term?
Hi @brayimee
That’s quite a story and one I’m sorry you have to live with. My first thought after reading that is myasthenia gravis that gets worse with physical activity and improves with rest. Have you been tested for that? Lab tests. Query some of your other symptoms together with myasthenia gravis and it seems they all could be plausible. As someone who has a lot of weird stuff that has been diagnosed I can also tell you that you can have uncommon symptoms you may not see listed. There are always outliers in science. Anyway, just one more thing your neurologist could check for. A neuromuscular neurologist may be more up to speed on that. There are treatments for MG. Whatever you have, I hope they figure it out and can help you. I also didn’t see any mention that you had EMG or NCS testing which is also done by a neurologist to test for muscle and nerve issues. If positive that could shed some light. Since your symptoms come and go it might be hit and miss to catch something with those two tests though. Just throwing out ideas. Keep us posted. Prayers for you. Zebra
I have the internal shaking too.
As far as the heart rate, I would get to 152, just walking to kitchen. My doctor started me on metoprolol to lower my heart rate and it works great I can even take walks again.
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1 ReactionGave me IBS.
It must be so hard for you to feel all these awful things.. my heart goes out to you..🥲
I have internal vibrations as well as terrible tinnitus & these make me very anxious.. & when I am anxious all hell breaks loose.. it becomes a vicious circle.. we suffer.. we want to cure ourselves so we become obsessed about getting the right diagnosis & we see many doctors.. pass many tests with no conclusive results which makes us even more anxious which brings on more worrying symptoms.
I strongly recommend that you try soft medicine to relieve your anxiety which could be the culprit; meditation.. exercise.. find a hobby you are passionate about.. enjoy time with friends this has really helped me. Good luck🍀
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1 ReactionI am older but was always healthy generally until this year, at 62. Started showing symptoms about 2 yrs. with possible UTI's, yet never any bacteria in urine. It felt like retention? Lost feeling, numbness/weakness in first my feet, up my legs, and after falling and breaking my left ankle and going to E.R. in Feb. 2023. It took until August, after many blood tests, a spinal tap, and several MRI's before I was finally diagnosed with MOGAD. Look it up, ask your neurologist to do a test. I am so sorry you are going through this. MOGAD is rare, so many neurologists and doctors won't or don't recognize it. Hugs and Best Wishes to you!
@teach3foruyahoocom
I’m so sorry to hear about your challenges with MOGAD. I looked it up. Never great to have rare disorders either. I have HNPP which is also rare. To read about it they only talk about the 85% of people with mild nuisance symptoms. Frustrating. For the other 15% it can be pretty challenging. My most limiting issue is chewing, swallowing, aspiration issues that really limit what I can eat. It can mimic myasthenia gravis for one thing plus a host of other neuropathy issues. It’s demyelinating so nerves are easily damaged. It’s genetic. My son has already had to have nerve transposition surgeries on both arms because of severe arm pain and loss of use in the last two fingers on both hands. We both have a lot of ongoing issues with it, but research dollars will be minimal since it’s rare and not life threatening unless I get aspiration pneumonia. My son and I have both battled issues with it since our teens. It’s slowly progressive without enough data to make predictions. There are definitely worse neuro diseases to have though so I always feel lucky in the grand scheme of things.
Prayers for you that you will see better days with all this. Neurological stuff seems to wax and wane a lot.
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2 ReactionsTinnitus and vibration could be connected to some degeneration or nerve tensions in your neck. I have that.
Disks in my cerebral (neck( have been depleted. I feel vibration in some position when sleeping but when I move it just goes away. I also do breathing exercises and the vibration goes away.
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1 ReactionMy neck it is very bad all the vertebrae c2, c3 etc