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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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@sopelletier Did you ever receive help or diagnosis?
Hi there, no I don’t generally come on this board any longer. In the email that’s associated with it. I don’t go to so often either. But I did see your message and I thought I would respond to you. No, I have not found any relief symptoms of become more frequent And more varied. I’m learning to live with them better although they can still be pretty debilitating. But actually just a week or so ago I stumbled across something else quite by accident that I am looking into. It’s called functional neurological disorder.FND. There are things about that that kind of steer me in that direction now that more relate to me as far as what might be causing it. I have not had any sort of official diagnosis by anyone. They’re all afraid to even call it migrainous. I’m on no medication’s. I won’t do that because I don’t even know what I have And neither do they. What else is interesting? Is just this week. I had an annual physical. For the most part, those are a waste of time especially when you’re dealing with all the symptoms that I am and apparently you are as well. But my primary care Wondered if I would be willing to go beyond my local area for potential help. I had said I’ve run out anything that’s available in the Grand Rapids area. He suggesting the MAYO clinics. I told him I had tried that back in December 2021. He said he would write a letter. I’m not sure I’m gonna go that route just yet there’s a lot to consider. So the short answer to your question, no, I have not found relief. If you decide to respond back to this, I will try to keep an eye on my email I wish you the best. I won’t be going back through this memo to correct errors so if there’s anything that’s confusing, I apologize for that.