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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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
@brayimee Lots of good ideas here hope you follow through even though it's tiresome but we are all here for you Praying you find the help you need Endocrinologist to check your hormones are,t out of wack
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!
@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! 💪🏼
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
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.
Don't mean to make you cry. Hang in there. 😊💪🏼💗
@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
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
@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