Connect
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!!
Like
Helpful
HugInterested in more discussions like this? Go to the Brain & Nervous System Support Group.
Connect
Did they give you anything to help?
-
Like -
Helpful -
Hug
1 ReactionThey tried everything and nothing helped. So I see a pain management doctor, who is very helpful, use a tens unit, which really helps and Alevee. But, just recently, my Neurologist suggested IvIg which is plasma infusion. I just had my second infusion, the first one was like a god send. I had energy and no muscle pain, then it started again just before the next infusion. Just had my second and hopefully I will feel the same. I will be getting them once a month. I think this is all that can help with rest when you are feeling tired. Just listen to your body.
-
Like -
Helpful -
Hug
1 ReactionDid you every find an answer to this? I have very similar symptoms. Two little kids and going on 20 months of this. I’m heart broken.
-
Like -
Helpful -
Hug
2 ReactionsHi, I have those internal tremors, not notice outside, check to see if you have White Matter Disease, tat's what I think it is I have it forever and had an MRI and going to Neurologist tomorrow again. It gives me all day headaches, high blood pressure sometimes, dizziness. I also have implants and going to have an explanation in April, another person that have this white matter wrote that after her explanation she had an MRI and her white matter was not present in the MRI. Don't know how this is possible but that is what she said .
Hi there. I see your posting is about 2 1/2 years old. I don’t know iHi there. I see your posting is about 2 1/2 years old. I don’t know if you still come on this board or not and I’m not sure how to navigate through it yet. But I’m curious what has developed in the last 2 1/2 years. I have a long story also similar to yours. Hoping to hear back from you. Thank you.
-
Like -
Helpful -
Hug
1 ReactionHi. So sorry you are struggling. I was wondering if your vibrations stopped with the plasma infusion? I have had them wake me every night since March of 2022.
I have been getting IVIG for 7 months now. And yes I have not had the internal vibrations. A lot of the inflammation has also calmed down. Still have so issues with nerve pain.
I completely understand all this. I have been a medical mystery for months now. I've had many tests as well and not many answers. I was diagnosed with Migraine Associated Vertigo, and I am undergoing tests for Small fiber neuropathy. The doctors also suggest Fibromyalgia may be to blame for my constant pain. I hope you found answers and are feeling better.
Kat
Oh my goodness, I have been going through the exact same symptoms since March 2022. Still no answers and I’ve had ALL the same tests. Were you ever able to get a diagnosis?
-
Like -
Helpful -
Hug
2 ReactionsI have had the same symptoms since March 2022 post Tdap shot. All of the same tests and still no answers. I’ve read the comments. Did you ever get any help or diagnosis?