Search Discussions

Main Content

  • mcgowans4
    Im currently in the middle of what’s possibly a second “episode”. I had the same symptoms in 2016 after reluctantly receiving the flu shot (req for my job). It started with trigeminal pain, burning sensations down the Right side of my body, right sided droppiness to mouth with numbness and burning/tingling sensations, blurry vision, slurred speech. But the worst pain was the trigeminal pain. I was sent to Stanford for MRI, spinal tap, labs and nerve conduction studies. All were normal with the exception of the nerve conduction showing decreased on the right side. Symptoms slowly resolved.
    Fast forward to 2018 and a few weeks ago I felt the strange buzzing in my right foot again, then had a syncopal (passing out) episode at work, was diagnosed as innapropriate sinus tach and the cardio electrophysiologist said is an autonomic nervous system issue. As of last Saturday the trigeminal neuralgia pain has returned with the burning parasthesia on the right side of my body. The pain is horrible at times! I went back to My primary doc yesterday & she wants to repeat the head and c-spine MRI, states that it looks like a relapsing/remitting episode and that we need to see if there’s change on the MRI.  All my labs look fine.
    I should email the neuro at Stanford to update him but I felt so frustrated the last time with not receiving any diagnosis. l that I’m reluctant to involve him yet. 
    My primary prescribed me Cymbalta yesterday for the pain (haven’t taken) I tried gabapentin and nortriptyline in 2016 and neither helped. I’m scared to take meds because I need to function at work. But I won’t be able to work if this pain doesn’t stop- so I’m stuck. I’m a critical care RN & cannot be impaired by a new med but also am near my tipping point with this pain. 
    So I’m just looking for some guidance, it’s so frustrating to be part of the medical community and feel so stuck and unable to get diagnosis.....  sorry if this post is kinda rambling, I’m in a rush at my lunch break! 
  • anywhereoutofthisworld
    Understandable that you're frusterated. I am newly diagnosed with Ms as of late July of last year. The symptoms you describe do sound like Ms but Ms does mimic other illnesses. You're labs came back fine & I assume they checked for Lymes disease, if not then they should. I'd have them repeat the MRI's as suggested & perhaps even the spinal tap but that may not be necessary. I wish I could offer you more advice. My own diagnosis came quite fast, the symptom that led me to my primary care doctor at first was in Mid may when I awoke with a sudden slurred speech issue, also the right lower side of my face felt stiff & smile was downturned. My mom (a retired nurse) was worried I'd had a minor stroke in my sleep. By the following month I was having an MRI of my brain & C-Spine, Blood work & a spinal tap. By late July of last year I had my diagnosis & was told it appears I'd had Ms for sometime. Not everyone's Ms experience getting diagnosed goes that smoothly and I am sorry you're going through this. I know how hard nurses work seeing how exhausted my mom was every day after work. It really is a matter of patience & communicating everything you're feeling to your neurologist. Even if it involves keeping a list of all your symptoms & bringing it with you to your next appointment. I wish you well & hope you get the answers you seek soon. This site has loads of supportive people who will be here for you no matter what your diagnosis is.
    We must accept finite disappointment, but never lose infinite hope. - Martin Luther King, Jr.
    We must accept finite disappointment, but never lose infinite hope. Martin Luther King, Jr.
    Read more at: https://www.brainyquote.com/topics/hope
    We must accept finite disappointment, but never lose infinite hope. Martin Luther King, Jr.
    Read more at: https://www.brainyquote.com/topics/hope
  • echobird
    I understand your frustrations believe me sometimes the lessons don't always appear on the first MRI is what I was told before. I hope that you get some answers soon. They have a better chance of seeing the lessons during a flair up to my understanding and experience so keep your fingers crossed and try and stay cool during the hottest times of the day because heat does affect us and try and not get to stressed because that has a negative affect as well on MS. I hope for the best for you and I'm sorry that you are going through this. Do you at least have family or friends to talk to about the problems you dill with maybe at least that way if you get to stressed out and have someone to talk to it might help. Unless the family is the problem witch in case I guess try ignoring them the best you can.
  • MS_Navigators
    Hi mcgowans4,

    That sounds incredibly frustrating- you're among many here who've been through what seems a lengthy trial of testing and "possible" diagnosing.  I wish I could provide answers to you, but I can tell you you're not alone in your fears and frustrations. I sure hope you get some answers soon.

    MS Navigator Jess