- CASE FILE
24/7 internal vibration that no one can feel but me!
ABOUT THIS CASE FILE
2007 I was told I have Chiari 1 malformation, this came after 5 years of searching for an answer to symptoms I had been having after delivering my first child. I did have an epidural , which I learned could bring on symptoms. The list at that time were head rushes, pressure migraines /headaches. I have listed the following three events because I feel they may have something to do with my current symptoms. In May of 2015 we adopted our dog, Bailey, who came to us very sick. We did not know she was sick, but the matter quickly revealed itself to us. She ended up having Parvo. She and I were playing in the yard and she accidentally bit me in the arm, pretty deep. At the same time my husband and I decided to paint our house ourselves. DO NOT ATTEMPT THIS AT HOME! Unless you have a cute tiny one-story house. We were up on ladders for hours and days moving and positioning our bodies in ways we never had and frankly should not have. House looks great, but came with a heavier cost than hiring someone else to do it. After that we took an annual trip to the Outer Banks with our brand-new Kayaks and had the most amazing restful week (that only happens for me when we are there). While packing up to leave we realized the Kayak rack broke and that we were going to have to tie down the Kayaks to the car to get them home. OH, how I wish we just left them there and cut our losses. It was the most stressful ride home I have ever experienced. The sound they made for hours on end was terrifying and all I could think was that we did not tie them well enough and they were going to fall off and kill somebody. The perfect catalyst that my nerves were waiting for to respond to. Before leaving on this trip I started having pain in my right hand effecting all my joints. Carpal tunnel? Had an upcoming yearly exam already scheduled after vacation will bring it up to the doctor then. Probably from all the painting on the house. Before the actual visit the symptoms moved to the left side and after the visit quickly progressed to an all over body joint pain and increased sensitivity to touch. This started the never-ending search for what is wrong with me when everything looks so right! So the breakdown of doctors and visits are as follows. After seeing my primary care in August of 2015 I saw my neurologist in September 2015 who ruled out that it had anything to do with my Chiari. He performed an EMG which showed nothing. I started physical therapy around the same which brought temporary relief. October 2015 I went to a Rheumatologist who did an xray of my hand and said there was the beginnings of Arthritis but nothing that should be causing the pain. She also performed a Beighton test which I scored high on. Definitely hypermobile suggested I see a Geneticist to look into EDS and a Chronic pain specialist for possible fibromayalgia. Went to see a Chronic pain specialist who dismissed me and any thoughts of fibromayalgia. That was OK with me since I thought that was just an umbrella diagnosis for what was going on with me. Febuary 2016 I saw a Geneticist who ruled out EDS based off a physical exam, no test done. Around this same time I started having vision issues, thought just age related. March 2016 had a phylloid tumor removed from my breast. April 2016 Echocardiogram...nothing. During this month I started having sensations in my throat like a sore throat, swollen glands feeling, but the pain was also on the outside involving muscles and nerves. May 2016 checked thyroid and for Strep, nothing. June 2016 saw an ENT...nothing. July 2016 Infectious disease...reoccurrence of EBV showed up but thought nothing of it, sent me on my way. A few back and forth moments between ENT and immunologist...nothing. December 2016 saw a Neuro Surgeon who felt the symptoms were likely not from Chiari 1 but suggested a few things. First he wanted me to wear a neck brace for 6 weeks to see if that helped with the pain and if it did we would discuss fusing my neck. I did not wear the neck brace until a year later. (life). July 2017 I had Lyme. September 2017 had my eyes checked because I had significant floaters appear, was told that I had floaters of an 80 year old but was not worried about them. Was told that my body would make adjustments for them and they would not be distracting. April 2018 rechecked because floaters increased and my body was not making adjustments for them, did the same in January 2019 and they are still distracting and ever present today. May 2018 follow up with Neuro Surgeon on the neck brace, it did not help symptoms would not suggest fusing and I am not a candidate for decompression for my Chiari. At this visit I also brought up an increase of vibrations that I had been feeling in my stomach to my head. At the time I described them as wearing a tens unit and having it on low. This has become my most life altering symptom that has only increased in intensity and effects my every moment. They are 24/7 and I have trouble sleeping.Doctors have tried to give me meds for sleeping and calming my nerves but they have had 0 effect on me. June 2019 started seeing a new Neurologist who has done a series of blood test, MRI's with and without contrast and another EMG. She did have a few things show up on the EMG, but nothing that would explain the vibrations. She has put me on B12 injections though my test comes back within the normal range it is on the lower end. She would like me to see another Infectious Disease doctor because of the following results which all came back above high normal. M pneumoniae IgG Abs, Cytomegalovirus Ab, IgG, EBV Early Antigen Ab, IgG, EBV Ab VCA, igG, EBV Nuclear Antigen Ab, IgG, HHV 6 IgG Antibodies and RA Latex Turbid. This is where I stand today, All symptoms still present but because of the vibrations I do not really notice the others too often, but they are still there. From a personal perspective, It is hard for me to focus and engage in an active listening conversation, I am easily irritated (I have realized because of the constant sensations in my body). I do not want my kids memory of me to be the mom who was always sick and irritated. From a spiritual perspective, though I struggle with the why on a lot of things, it is well with my soul.