How My MS Diagnosis Journey Became My Origin Story
For Ben Hofmeister, getting diagnosed entailed a five-year search for answers
If I were a superhero (or a supervillain, for that matter), I’d have an origin story. As it stands, I’m not even a minor hero in real life, and only a mediocre one when appearing in my own stories. I’m just a guy with multiple sclerosis, and all I have is a diagnosis story — and not even a very thrilling one at that. However, since it has a bearing on future columns and I’ll occasionally refer back to it, I’ll subject you to it now.
Looking at me today, you’d never know I was once in the military and had a fairly active lifestyle. While running in 2009, I felt myself slowing down and having my first issues with what I now know was foot drop. Later that year, I slipped and slid down the stairs while entering my wedding reception. I wrote the former off to knee and ankle injuries that I’d been ignoring, and the latter to general clumsiness and nervousness.
Over the next year, the issues progressively worsened, and by 2011, as I got ready for a trip overseas, it became impossible to ignore. I was struggling on runs and had developed enough foot drop, along with a right-sided limp, that the members of my military unit took to referring to me as “cricket” due to my energetic hop. I reinjured my right ankle while running downhill, which was becoming increasingly difficult due to problems with balance. And I hurt my left knee in Iraq, while moving on uneven terrain.
When I returned home, I took a desk job and began to sort out my problems, beginning with old injuries. A knee surgery was followed by a complete ankle reconstruction in 2012, but even after rehabilitation, the problems remained. Besides the gait and balance issues, I began to develop a feeling that I was constantly falling forward whenever I descended stairs.
Finally, some answers
I remembered an unexplained illness in Afghanistan almost six years prior, and on a whim, I asked to be tested for Q-fever (yes, it’s a real thing). Sure enough, I was still positive, with antibody ratios high enough to warrant 18 months of treatment for a chronic infection. My symptoms did not improve, and toward the end of this two-drug regimen, the infectious disease doctor noticed some abnormal reflexes and sent me to a neurologist.
After our first visit, the neurologist did a thorough examination, then ordered an MRI of my brain and spinal cord. When he viewed the images, the lesions were obvious enough that he decided a lumbar puncture was unnecessary and made his decision. I was diagnosed with multiple sclerosis on Valentine’s Day in 2014.
When he told me the news, I can distinctly remember him saying, “You’re taking this well.” Looking back, I suppose I was. Initially, I was just happy to have an answer, especially a nonfatal one. Later on, I did not take it so well. Even now, eight years later, there are plenty of times when I don’t.
For several years, I found myself telling people that my diagnosis was quick and straightforward. When I finally considered my own diagnosis story, the realization dawned on me that it really took almost five years of searching. That seems to be consistent with other people in the MS community — people who are heroes to me, people I want to be like.
Maybe it’s my origin story after all.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Jim Pitts
Thinking about in my own story the time lines are similar , the differences for me were I was suffering for a couple of years with minor deficits but when I started to really want answers COVID hit and another 2.5 years past , I finally got my answers in January of 21 . PPMS . Coming from a fit active body to using a cane most days to hold me up . Your story resonates with me , specially the feeling of uncertainty and anger that I still get when I need to do a simple task like putting socks on , Good luck with your journey and here's to hoping a Remyelinating drug is available soon . Jim
Benjamin Hofmeister
Thanks for reading Jim!
The abrupt shift in identity was so rough for me and maybe the shift in the "little" pieces of that identity more than the big ones. I can't be a green beret anymore but I knew MS was going to take that identity and made peace with it. I didn't know it would also take my identity as someone who could put their own shoes on in under 10 minutes and that one stings more.
Ben
Abbey
Hello Ben, firstly, I'm so sorry that you career was, ultimately, ended by your MS.
Thank you for sharing your diagnosis story.
For myself (a Southern UK resident), my (1991) diagnosis had taken 5mths and, as a manager, the first thing I did was go in to work, tell my staff, telephone my boss, give him the news, and offer my resignation - lucky my (North England) boss had brightened my (darkened) day with humor... and had refused my offer.
The humor won't be good without knowing that I'm 147cm (not-so) tall, and weigh 91lbs.
Boss'd said: "I've heard of that"c, interested I'd asked for more... and, no doubt straight-faced, he'd said "It makes you grow a foot (30cm).".
Laughter really is the best medicine and, now living with SPMS and a significantly reduced lifestyle, his comment still makes me chuckle.
Ben, I sincerely wish you a good healthy journey with your MS, and respectfully suggest that, along with your various medicines, you take it with a good dose of humor.
32yrs on, it still works for me. Abbey x????
Benjamin Hofmeister
Hi Abbey! I was going to make a joke about carrying rucks heavier than you, but since that contributed to my knee and ankle surgeries as well as a bulging disc, it kind of falls flat. (I'm apparently stil going to make it) I agree that a healthy dose of humor is key. There's plenty of depressing times etc but in all seriousness, if I (and my wife, kids, friends) couldn't laugh at this sometimes, we'd be in a dark, dark place.
Ben
Ruth Hoham
Ben - Well written expression of our similar origin stories. Thank you!
Benjamin Hofmeister
Thanks Ruth!
Per the MS paradox, I wish we didn't have origin stories.
Ben
Lori Hodgins
Hello Ben !! My life wasn't as physical as yours but I was diagnosed in 2005. I had 2 episodes with optic issues but by the time I got in to see a specialist they had cleared up. Finally in 2005 my entire left side went numb and my husband insisted that we go to the emergency room of the local hospital to get some answers. We both thought that I had done something to my back. The doctor that saw me that day was a neurologist and after an exam and the history of my vision problems he calmly told me that he thought that I had MS. He got me in 4 days later for an MRI which confirmed his prior diagnosis. We had a 7yr old daughter and twin boys that were 5 at the time. When I heard the diagnosis it was like a punch to the stomach but then I quickly changed my way of thinking and said to my husband "I have MS but MS doesn't have me" There is so much more to my story but I feel that I am not alone in this journey because my family has travelled and will continue to travel with me through all of my ups & downs !!!
Benjamin Hofmeister
Thanks for the comment Lori!
It'd be a little easier to deal with if it was just me it affected. I couldn't ask for better love and support from my wife and 3 boys (10, 8, & 6), but I wish MS wasn't part of their lives too.
Ben
Philip Marino
I was diagnosed when you were, and I can honestly say, that I know how you feel. After all, we're reminded of it every second of every day. If you can function relatively well(occasionally), sometimes you can almost forget about it for a short while.
Benjamin Hofmeister
Thanks Philip! And thanks for the commiseration lol. It beats toxic positivity any day!
Ben
Kathy Eisenmenger
Aloha Benjamin, I appreciated your article's lead-in giving a literary nod that every character has an original story. It must have been frustrating to experience those erratic symptoms leading to your diagnosis. Like you, when I received the diagnosis of MS I felt relieved - at last, there was a bona fide reason for the symptoms. I, too, had to abandon my profession and from doing many activities that gave me joy: backpacking in the mountains, long-distance cycling, hosting big dinner parties, so many things. After 12 years, I'm still on my journey to reinventing my life, but I'm hopeful. And revising my activities: trading in my road bike for an e-bike, hosting smaller social get-togethers, but no longer engaged in my professional work. I'm on the journey to discovering what's next that I can do within the framework of my fatigue and cognitive problems. Good luck to you and your family.
Benjamin Hofmeister
Thanks Kathy! Yes, it seems like we never stop the journey of reinventing our lives around our limitations. I've got an upcoming column that touches on that journey. Be sure to look for it soon and comment please.
I thought Hofmeister was difficult. How many times do you get asked to say your last name for people?
Ben
Karan winters
I have been to several doctors including 3 neurologists who tell me this isn’t MS because my symptoms are not consistent. Although I have the symptoms every day, they don’t last long. I retrieve my energy and balance after one to two hours.. then I’m good for two or three hours and then back to balance issues. It’s very frustrating to have no diagnosis. Does anyone out there have similar symptoms. It’s mostly balance but sometimes I have slurred speech. No pain
Benjamin Hofmeister
Karan, no two cases of MS are the same and no two sufferers have identical symptoms. I can really only speak for myself here, but my symptoms are anything but consistent. What tests have you had done? MRI, spinal tap, etc?
andra
hi Ben, thanks for sharing! I am a 46 year old business owner and mother two, diagnosed last summer. My MRIs, according to my neurologists, indicate that I have had RRMS for least 15 - 20 years(!) Yes, a sense of humour is certainly necessary ;-}
The fatigue is unbearable!
Benjamin Hofmeister
Thanks for reading and commenting Andra! Fatigue is miserable and impossible to explain to anyone without it. A sense of humor is vital, isn't it? I'd be lost without mine.