Search Discussions

Main Content

  • grebelmn
    I went to my primary doctor a couple of years ago because I was having issues with my balance (if I lose my balance I have no chance of correcting myself so I fall), intermittent double vision, dizziness, horrible muscle cramps (where it feels like my bones are breaking) and memory/word finding issues.  She did a bunch of tests and found that my B12 level was at a critical low so I was put on replacement.  My B12 levels are now much higher so well within therapeutic levels.  She had me see a neurologist who ordered a bunch more tests including MRI, auditory/vertigo and neuropsych testing.  He also found that I have neuropathy in my hands and feet.  I have tremors in my left hand from time to time where it's tough to hold onto anything because it's shaking so bad. 
    Fast forward to a month or so ago I was at work and the left side of my face, hand/arm and trunk went numb and tingly so much so that I thought for sure I had a left sided facial droop but nope.  I couldn't feel what was in my left hand but yet I was.  I went to the ER after this happened intermittently for a couple of weeks, each episode lasting anywhere from a few moments to an hour and a half.  CT and MRI were clean, no lesions again.  I had a follow-up with the neurologist and she tried to say it was "brain irritation" and wanted to give me a medication to treat my migraines (I don't have migraines anymore, no aura, no visual change, no headache, nothing).  I contacted the patient advocate and got someone to finally listen to me because after reviewing my records they were incomplete and/or incorrect.  She asked if I'd been to the MS clinic yet, I told her no because they keep saying that it's not MS.  Just had SSEP and VEP testing this past Thursday with follow up on the 11th.  The technician told me that they were getting "informative results" during the leg portions of the SSEP testing, it was giving me full body jerks which started on the side the stimulator was on and the whole time I was hearing her click click click during it.  I feel like I'm going nuts waiting on the next appointment and hopefully this time the doctor will actually listen to me and not write me off like I'm losing my mind.  
    Has anyone else had similar reaction to the SSEP testing?
  • anywhereoutofthisworld
    Sorry to hear about your troubles & thank you for sharing your story. I was diagnosed very quickly with Ms & you can read my story in my profile. I'd definatley seek an MS specialist. You may be getting clean MRI's but could still have Ms potentially. I'd request a brain MRI with contrast as well as bloodwork to rule out Ms mimics such as Lymes disease. Stress can excerbate Ms so keep that in mind, I know stress is a very natural reaction to what you're going through now. This site is a great support system so you've come to the right place. I also wanted to note, if there's any Ms type findings on the brain MRI with contrast, you might consider getting a spinal tap as well.
    Hope is patience with the lamp lit. - Tertullian
  • MS_Navigators
    Hello grebelmn,

    I hope that your doctors are closer to finding out what is causing your symptoms with this additional testing. If you think that it may be MS, here is some information about possible MS and diagnosing MS that may be helpful.

    If you have other questions or concerns, give us a call at 1.800.344.4867 (M-F 7am-5pm MST) and ask to speak with an MS Navigator.

    Best,
    Stephanie, MS Navigator