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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i agree autoimmune diseases often take years to diagnose
@internalvib based on your idea of bodies energy consider the amount of exercise you do daily and does this allow your body to rid itself of excess energy? I’ve found that if I exercise/stretch before bed I’ve eliminated any RLS symptoms. I also walk 2 miles daily so I know that I’m ridding myself of any excess energy stores.
Perhaps you may want to consider seeing a “movement disorder” specialist. its a sub speciality of neurology and he subpeciality hasn’t been around that long. Those drs specialize in diagnosing and treating atypical movements. Good luck!
Hi all did anyone figure out this condition? I seem to be getting the same symptoms and could really use some advice. Is it long Covid? Menopause? Hope everyone recovered. Sending prayers. Xx
Maybe Parkinson's or med side effects? Ask a neurologist check you. Don't just believe what your doctor says. Ask for a proof. If he says it's Parkinson's, ask how he knows it is P. Just shaking does not mean you have neurological issues. I think nowadays they can find out with Brain MRI, but not sure.
I suffer from many of the symptoms you describe here. In addition, I have terrible hot flashes and profuse sweating (mostly in the morning or at night) as well as terrible chronic neck pain with no cause seen on my cervical spine MRI. I plan to push for upright dynamic MRI to see my cervical spine in flexion and extension to see if something is getting compressed with motion.
Hi Brayime- I could have written this myself. Same symptoms going on for four months. Most of the tests you mention. Did you find any relief? If so what worked for you. I hope you are doing so much better!!!
Did you ever find out the cause?
I have not. Getting desperate. The doctors are stumped and I keep getting passed off from one to the next. It’s so hard.
@pakeemer, same symptoms. Did you find any relief?