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Advanced MS involving the brain stem and vagus nerve

The time has come to seek your help with what I believe is taking me down for the last time. Backstory – my first attack was during a record heat wave summer 1980 when I was working 12 hour night shifts in the ER. My orthopod advised me to see if it returned. The second was in May 1986. I saw another orthopod who ordered studies of the brachial nerves. The radiologist refered me to neuro who dx MS with the hot bath report and increasing numbness of my right arm. I received oral steroids for the first time. Transverse myelitis attacks consumed the next two years. Let’s skip ahead to the aftermath of countless attacks, high dose IV steroids and endless fatigue. In early 1999 my brain stem took a hit with intractable vomiting and severe ataxia the first symptoms. Neuro cried when he told me. I battled for years to remain upright and on my feet. Then, in May 2013 another brain stem/vagus nerve attack. Gastroparesis took 30+ pounds and I still have daily management tasks to maintain weight. Today I bring you to the end of the story. My brain stem’s autonomic nervous function is in terrible trouble. BP and pulse increased to rates as high as 220/120 p. 120…yesterday. A new neuro consult is ahead because my current one looked at my numbers, told me his was an office practice and sent me back to primary care. Friends please help me find others who have been tossed into this scary place of advance disease. MS is supposed to leave us a normal life span. Everyone said we have sensory or motor not both. Hope is fading…thanks for listening. My name is Carol and I am a 67 year old RN from Georgia.

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  • AllisonJo
    3 years ago

    HI Carol,

    Symptoms are about the same as MS. It’s a tough thing to diagnose and I probably need to get over getting a proper diagnosis. I’m being treated with sodumedrol IV. Was getting it once a week, now every two weeks. I do feel unheard by the physicians…and I have a GOOD one. I go to Mayo in Phoenix and he’s great, but it takes a long time to get anything done. I am down about the same but it’s because of a new medication for the trigeminal neuralgia. It’s kicking my butt! Thank you for replying. I hope we can continue to compare notes. It’s such an uncertain kind of illness that I feel like I get more help here than from the doctors.

  • AllisonJo
    3 years ago

    Hi Carol,

    I remember my first attack as well…another hot summer in Phoenix and a trip to Mexico that ended up with me in an Emergency Room with no feeling or control of anything below my neck. I have a lesion at C1-3 and others in my spinal cord. No brain lesions. They thought it was a tumor so I had a horrific surgery. Good news, no tumor. Bad news, biopsy inconclusive. Along the way I lost my job and continue to get worse. Trigeminal neuralgia is the worst of it. Glad to hear you are seeing a new neuro, Carol. Keep searching for those answers, for all of us in this fight. Mine is treating me now for Neurosarcoidosis rather than MS because my lesions are not scarring, but rather staying active over years. Could this be a possibility for you? Please keep us updated. I’ll be watching. Allison

  • Vagirl author
    3 years ago

    It is so nice of you to tell me your story. Do you ever feel unheard by the physicians? What is your current status? I am down ~20 hours a day. Neurosarcoidosis is new…what are your symptons?

  • DonnaFA moderator
    3 years ago

    Hi Carol, I’m so glad you found us. I know that it’s scary, and it feels like you are alone. But please know that we are here to walk with you, and to share information, support or just listen if you need to talk.

    You can reach out to an MS Navigator either online or by calling 1-800-344-4867.

    A Navigator can help you identify appropriate treatment options, help you connect with and build a healthcare team to get you through this disheartening time. They can also help you find a local support group, and connect with peers.

    We’re so glad you’re here, Carol. Please let us know how it goes with your new consult, and please do reach out to a Navigator. Don’t hesitate to reach out to us here, or on our Facebook page when you need to feel that you are not alone.

    We’re sending you all good wishes. We’ll be thinking about you and hoping to hear from you soon. -Warmly, Donna ( team)

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