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!!

Another rule out is GI for colonoscopy. Something isn't right with my intestines. It's just so hard when I go through testing with not many results. I just know (I'm a broken record) I have 2 hemangiomas, my pulse has been incredibly abnormal and my left side has a lot if burning. Ugh! I just want to feel better.
I hope you are well today!

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@brayimee

Lots of tears reading your post! It's been such a struggle going from 100% mom to barely functioning. My youngest is 10, oldest 22 so they are very self sufficient, but I want to be hands on with them and doing things with them and I can only be up so long. It's really the oddest symptoms and pain that I have never experienced before.
My husband had been such a trooper and promises I won't be like this forever. He will take me anywhere to get help.
Aimee

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@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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@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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This means a lot. I am in tears again. I pray every night and every day that I will wake up feeling better so I can jump on the trampoline with my son, go running with my daughter or sit at the beach with my family again. I feel like I am morning the loss of mobility, oddly using the restroom normally and just feeling "normal". I am happy to report that my brain MRI is normal. Tomorrow I will see the cardiologist again to gain some insight on why I suddenly developed SVTs and PACs and I have a lower lumbar MRI to see if that will give answers to the weak legs, bathroom issues and left abdominal nerve/muscle spasms.
You are so very kind. Sending you a virtual hug x

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@johnbishop

@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.

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Thank you! I will finish these last tests and follow up with my PCP. This has been a difficult journey to say the least. Going from healthy to struggling overnight.

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@brayimee

This means a lot. I am in tears again. I pray every night and every day that I will wake up feeling better so I can jump on the trampoline with my son, go running with my daughter or sit at the beach with my family again. I feel like I am morning the loss of mobility, oddly using the restroom normally and just feeling "normal". I am happy to report that my brain MRI is normal. Tomorrow I will see the cardiologist again to gain some insight on why I suddenly developed SVTs and PACs and I have a lower lumbar MRI to see if that will give answers to the weak legs, bathroom issues and left abdominal nerve/muscle spasms.
You are so very kind. Sending you a virtual hug x

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Don't mean to make you cry. Hang in there. 😊💪🏼💗

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@brayimee

Hello! nice to meet you đŸ™‚

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!

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@brayimee Aimee, I've done some poking around on the web and I am wondering, have you ever been tested for Guillain-Barré syndrome? Its an autoimmune disease that attacks the peripheral nervous system. A lot of your symptoms sound similar, like the leg weakness, the numbness and tingling, the bowel and bladder issues, back pain, abnormal heartbeat or BP, I mean it sounds like you have a lot of these things. You should ask your doc about this possibility. Did you have any sort of vaccination or have a flu or anything in the weeks leading up to when this started? GB is often triggered by these kinds of things and apparently can start rather suddenly after such a trigger. Anyway, it's an idea if it has not been mentioned to you so far. Hank

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@jesfactsmon

@brayimee Aimee, I've done some poking around on the web and I am wondering, have you ever been tested for Guillain-Barré syndrome? Its an autoimmune disease that attacks the peripheral nervous system. A lot of your symptoms sound similar, like the leg weakness, the numbness and tingling, the bowel and bladder issues, back pain, abnormal heartbeat or BP, I mean it sounds like you have a lot of these things. You should ask your doc about this possibility. Did you have any sort of vaccination or have a flu or anything in the weeks leading up to when this started? GB is often triggered by these kinds of things and apparently can start rather suddenly after such a trigger. Anyway, it's an idea if it has not been mentioned to you so far. Hank

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Hmmmm! I did just now read about it. I do have some symptoms. I will see if my doctor wants to take a look, he hasn't been open to many of my suggestions.
I was sick most of January this year and was put on antibiotic doxycycline in February. That is the only thing I can think of. I woke up end of March with upper left abdomen pain that wrapped around to flank. It lasted a few days and subsided. Then a few weeks later, I woke up with the same pain and it never went away. Everything got worse. Some pain has subsided, but my left side has so very many symptoms ( and sometimes the right side also gets tight around the abdomen) and the heart rate?? I was a weight lifter, runner, HIIT junkie and now going up my stairs causes a 150 pulse. And these weak legs scare me.
I just don't understand and it makes me so very sad that I just lay around all day after being so active. I'm not a quitter, and this has stopped me in my tracks.
Thank you so much, Hank!!
Aimer

REPLY
@brayimee

Hmmmm! I did just now read about it. I do have some symptoms. I will see if my doctor wants to take a look, he hasn't been open to many of my suggestions.
I was sick most of January this year and was put on antibiotic doxycycline in February. That is the only thing I can think of. I woke up end of March with upper left abdomen pain that wrapped around to flank. It lasted a few days and subsided. Then a few weeks later, I woke up with the same pain and it never went away. Everything got worse. Some pain has subsided, but my left side has so very many symptoms ( and sometimes the right side also gets tight around the abdomen) and the heart rate?? I was a weight lifter, runner, HIIT junkie and now going up my stairs causes a 150 pulse. And these weak legs scare me.
I just don't understand and it makes me so very sad that I just lay around all day after being so active. I'm not a quitter, and this has stopped me in my tracks.
Thank you so much, Hank!!
Aimer

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@brayimee Not that I want this to be your ultimate diagnosis, but it's really important to rule it out. And if it is Guillain-Barré at least you will know it.

Here are two Mayo Clinic web pages on it:
https://www.mayoclinic.org/diseases-conditions/guillain-barre-syndrome/symptoms-causes/syc-20362793
https://www.mayoclinic.org/diseases-conditions/guillain-barre-syndrome/diagnosis-treatment/drc-20363006
This page has Mayo doctors that treat Guillain-Barré:
https://www.mayoclinic.org/diseases-conditions/guillain-barre-syndrome/doctors-departments/ddc-20363037
Do you live near any of the Mayo sites? Best, Hank

REPLY
@brayimee

Hmmmm! I did just now read about it. I do have some symptoms. I will see if my doctor wants to take a look, he hasn't been open to many of my suggestions.
I was sick most of January this year and was put on antibiotic doxycycline in February. That is the only thing I can think of. I woke up end of March with upper left abdomen pain that wrapped around to flank. It lasted a few days and subsided. Then a few weeks later, I woke up with the same pain and it never went away. Everything got worse. Some pain has subsided, but my left side has so very many symptoms ( and sometimes the right side also gets tight around the abdomen) and the heart rate?? I was a weight lifter, runner, HIIT junkie and now going up my stairs causes a 150 pulse. And these weak legs scare me.
I just don't understand and it makes me so very sad that I just lay around all day after being so active. I'm not a quitter, and this has stopped me in my tracks.
Thank you so much, Hank!!
Aimer

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@brayimee also, what was the specific thing that they were giving you doxycycline in January for? I have read that infections can lead to GB syndrome as well.

REPLY
@jesfactsmon

@brayimee Not that I want this to be your ultimate diagnosis, but it's really important to rule it out. And if it is Guillain-Barré at least you will know it.

Here are two Mayo Clinic web pages on it:
https://www.mayoclinic.org/diseases-conditions/guillain-barre-syndrome/symptoms-causes/syc-20362793
https://www.mayoclinic.org/diseases-conditions/guillain-barre-syndrome/diagnosis-treatment/drc-20363006
This page has Mayo doctors that treat Guillain-Barré:
https://www.mayoclinic.org/diseases-conditions/guillain-barre-syndrome/doctors-departments/ddc-20363037
Do you live near any of the Mayo sites? Best, Hank

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I will definitely mention this and read up.
I am in Michigan, so not far, but not close đŸ™‚
Aimee
My health is worth the travel.

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@jesfactsmon

@brayimee also, what was the specific thing that they were giving you doxycycline in January for? I have read that infections can lead to GB syndrome as well.

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No real reason. Just because I had been sick for a month and it was given incase I developed pneumonia. I wasn't even tested for flu.
Aimee

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@brayimee

No real reason. Just because I had been sick for a month and it was given incase I developed pneumonia. I wasn't even tested for flu.
Aimee

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Okay, well, it's possible whatever was wrong with you in January could be related to your developing this illness, especially if it turns out to be GB. I read that it can take up to six weeks to develop after the trigger event (such as having a flu) and that sounds like the right time frame doesn't it? Well, If it turns out not to be GB then maybe it could be related to contracting some type of weird virus.

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