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.

Diagnosed MS with the hot bath report

I saw another orthopod who ordered studies of the brachial nerves. The radiologist referred 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.

The aftermath of MS attacks, steroids, and fatigue

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.

Vagus nerve attack

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.

The scary place of advance disease

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.

Share your story

By providing your email address, you are agreeing to our Privacy Policy and Terms of Use.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.