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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@brayimee Welcome to connect where we aren't Dr.s but try to help or give suggestions where we can. Wow I must say you have been through the wringer with test . Can I ask you have you ever had a fever with any of your episodes before or after ? Have you ever been bitten by a tick or anything else . You have gives us a lot of information , do you sweat during ,before or after these episodes. Have you seen a Endocrinologist ? Just trying to think of anything that may help . Others will join in I,d like to ask our director @ colleenyoung to this conversation
Hello! nice to meet you 🙂
I have not encountered any fevers. I will occasionally exprience profuse sweating, but only during a very bad flare up. I use to wake up soaked, but that has lessened. I take 2 Gabapentin and a muscle relaxer just to let me sleep for 8hrs. I know how very important sleep and hydration is. I do not believe I have been bitten by a tick, at least not to my knowledge. No Endocrinologist at this time, maybe the next step?
Right now as I type, I felt the internal vibration and when it stopped, I feel this tingling rush up into my head, and like a nerve sensation in my left abdomen and going down into my glutes. I know it sounds like the strangest thing, but it has been incredibly painful and likes to stick to the left side. I think one of the worst parts is my bowels don't work properly. Passing gas is so incredibly hard and I get so very bloated. Occasionally I can shift positions or do movements to help. Urinating has been better, but I would get so much pain on the left side from to being able to use the bathroom for both. PT has helped with some muscle relaxation and I see minimal improvement with the chiropractor. The chiropractor said I did have a lot of muscle tension and my spine was off in a few places, but I have had 6 adjustments with minimal improvement.
As far as the hemangiomas, I have this theory that because they are vascular tumors in my vertebrae, they swell when my heart rate goes up cause some radiating nerve pain. Such as the T11 if it swells with increased BP/Pulse, is it firing nerves?
This is what I have read about T11 nerves :These vertebrae are important in the control of your kidneys, ureters, colon, small intestines, lymph circulation system, buttocks, and the uterus (in women). As with any of your vertebrae, the T11 can be the culprit of a wide range of health problems. So these are areas I have had issues. As far as T1, this is what I have read: The T1-T4 thoracic sections control primarily chest muscles and organs, such as the heart and lungs. I do get tightness of chest and during this whole crazy issues, my heart started PACs and STVs. I have never had heart health issues and woke up one day having them. So Like I said these are theories, but I just wonder if something is misfiring with nerves and my heart?? I am occasionally able to help my bowels with tennis balls lined up against the spine. Strange!
Thank you for your reply. All advice and questions are welcome!
@brayimee. So strange keep digging I know you are. With your sweats that why I suggested a Endocrinologist. Are you at Menopause age?
I'm 41 years young. So I'm not sure about menopause?
I will keep digging and advocating for myself. I need to get better for my family. 5 children keep me going, but I can't mom the way I did 5 months ago and it breaks my heart.
@brayimee Hi and welcome. Dear, dear, dear …you got me with 5 kids! My heart breaks for you terribly. I'm Rachel and I have Small Fiber Peripheral Polyneuropathy from B12 defiiciency. I suffered quite a bit, since 46 years old, before concluding my deficiency which created many of the feelings and sensations you describe. Please tell me your Neurologist, or someone, extensively tested your blood for deficiencies?
@brayimee Regarding your lifestyle and health change…you've said it perfectly, you cant mom like you used to. I was incredibly blessed that my son was in college and daughter was 16 when all hell broke lose in my body. I absolutely can not fathom if I were to have had little ones. You are going through some hell of your own and I'm very sorry. I was unable to mom the way I used to throughout my daughter's last 3 years of high school and on to college, and it crushed me. Prior, when she was 13, I also had different health issues which disrupted our normalcy as well. It truly is heartbreaking. I learned a huge amount of perseverance, like it or not. You sound determined and if having 5 children isnt enough to push you, I dont know what is! You just keep being amazing by advocating for yourself, hold those Drs accountable and try as best you can to remain hopeful. HOPE and POSITIVITY can make all the difference in the world when fighting uncertainty. And when you may struggle, please know Connect is here for you with compassion, brain storming and support. If you are able, please keep us updated on your progress. Best of everything to you.
Sending good vibes your way~
Hello @brayimee, I would like to add my welcome to Connect along with @rwinney @lioness and other members. You mentioned that the symptoms are associated with one side of the body. I have no medical training or background but have read a little about Essential Tremors and am wondering if it may line up with your other symptoms as well. Here is what Mayo Clinic mentions for Essential Tremors symptoms:
"Essential tremor signs and symptoms:
— Begin gradually, usually more prominently on one side of the body,
— Worsen with movement
— Usually occur in the hands first, affecting one hand or both hands
— Can include a "yes-yes" or "no-no" motion of the head
— May be aggravated by emotional stress, fatigue, caffeine or temperature extremes"
Mayo Clinic – Essential tremor – Symptoms & Causes: https://www.mayoclinic.org/diseases-conditions/essential-tremor/symptoms-causes/syc-20350534
There is also a discussion on Connect — Essential tremors: https://connect.mayoclinic.org/discussion/essential-tremors-1/
It sounds like you have seen numerous doctors and specialists, have you considered seeking help at a major teaching hospital or Mayo Clinic?
Hello! My neurologist simply said I'm stumped and sent me for a brain scan. The results just came in and they are normal. I'm so very lost right now and pray for answers so much. My kids have been very understanding, but it's so hard for me to not be able to interact like I did 5 months ago. I will write down deficiencies and ask.
Thank you 🙂
I am very much ready to seek help with Mayo Clinic or other teaching hospitals such as UofM.
I have read about essential tremors before and the only thing I do not see is external shaking. It's all inside. I will look on the connect discussion and see what other how other peoples symptoms associated with mine 🙂
Thank you for your reply, I'm looking for any and all help.
@brayimee If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.