Imagine, over a few days, becoming significantly handicapped. This happened to me. I lost the use of my right (dominant) hand almost completely. I was unable to write my name, use a computer, send a text, hold a fork, or even brush my teeth. Thankfully, I’m on the path to recovery and will very likely regain both full function of my hand and full strength over the next few months, placing me in the fortunate top 5-10% of people who recover quickly and fully from the neuromuscular condition Parsonage-Turner Syndrome (also known as brachial neuritis).
Background
In November 2023, I was doing a Kettlebell workout routine that I’ve done many times before. It’s a challenging workout with swings, snatches, and presses using a 40-pound kettlebell, which is not particularly heavy, and I had been lifting weights regularly. During the exercise, I felt a twinge in my right upper back and stopped working out immediately. I no longer “push through” any pain as I’ve learned the hard way that it only extends the recovery process exponentially.
Over the next few days, I had the symptoms of a bad muscle pull. It was uncomfortable to sit/stand in certain positions and particularly uncomfortable to sleep at night in many positions (so much so that I’d sometimes wake up from the discomfort). A few days later, I got a particularly vigorous massage, but I told myself that it was a good kind of pain that was getting all the knots out of my back.
The day after the massage, I started feeling like my right hand was less responsive (particularly in my ring and pinky fingers), and it generally was acting weird. I was scheduled to go to Kenya to see my father, who had just had hip surgery in a few days, and the hand continued to feel strange over the next few days. Right before my trip, I called my father-in-law, a pediatric neurologist, and told him about my hand. He had me do a few mobility tests with my wife just before I left the house to go to the airport and asked me to keep him updated on how it felt during my trip.
While I was in Kenya, I started to lose more and more function each day. At my worst, I could not write my name, type on my computer, brush my teeth, or even use my hand to eat. I was particularly disabled at any lateral finger movement (spreading my fingers and resisting force in both directions) as well as finger extension. I could not even put my hand in my pocket because it involved pushing the material ever so slightly into my trousers. I had some mild tingling in my smallest fingers, but I could feel heat/cold and pressure. Also, while the shoulder pain was getting better, I started developing pain in my forearm and my lat muscles, likely from the muscle atrophy.
If I was to best try and describe it, it felt like there was a wire from my brain that was “cut.” My hand would no longer obey my brain’s instructions, which is a strange feeling and hard to describe if you’ve never experienced something like this.
Diagnosis
When I returned from Kenya to New York, my father-in-law examined me in person. It was clear from the examination that he was worried. He was on the phone all day speaking with neuromuscular experts, and I was prescribed corticosteroids the next day. It was a very high dose of Prednisone, which came with significant side effects – heartburn, insomnia (up at 2am every day), mental fogginess, and increased appetite.
After starting the steroids, my back pain got better almost immediately. Over the first few days, I noticed motor function slowly returning to my hand. I also needed to schedule MRIs of my neck, brain, and upper back, an EMG test, and see a Neuromuscular specialist. After trying to schedule this myself, I realized it would take many months — time I did not have.
Friends who are doctors in NYC, as well as my primary care provider, suggested going to ER to get all these tests done and rule out more serious things like a stroke or ALS (Lou Gehrig’s Disease). I spent close to 20 hours at the ER and over 1.5 hours inside the MRI machine, and we were able to rule out both of these conditions on that visit. They did find a few issues in my cervical spine that are likely due to poor posture (tech neck) and genetics, but they did not explain my symptoms. Also, the ER is not a fun place, and it was the first time that I really felt like a “sick” person since my symptoms began.
We also started calling in favors from friends who were all amazing. I spoke to a friend from college who’s a neurologist in England, a neuromuscular specialist who went to medical school with another friend, and my father-in-law was able to accelerate an appointment for an EMG test and meet a neuromuscular specialist in Virginia in a couple of weeks (which would have taken months to schedule in NYC).
All the specialists we spoke to independently suspected it was Parsonage-Turner Syndrome (Brachial Neuritis). This is a rare condition (a few thousand cases a year in the US) and affects mainly men (75%) with a median age of 41.4 which, coincidentally, was my exact age when I started getting symptoms. What was most concerning to me was the poor recovery rates – only 35% of people get better in the first year, 70% in two years, and 89% in three years. I was worried about living without using my right hand for an extended period. I was already using the accessibility features on my phone and computer, sending most of my texts and emails by dictating the messages or voice notes or ignoring messages.
Throughout this process, I was generally positive, but I broke down once when I sat on my phone for 15 minutes, struggling through sending a text message and realizing this could be my life for an extended period. Thankfully, I had loved ones helping me logistically and emotionally. My wife would open things for me, button my shirts, and generally do her best to hide the worry from her eyes. My three-year-old always lightened the mood by asking me to show him my good and bad hands and imitating my movements.
While taking the steroids, I noticed that the pain in my back and forearms went away almost immediately, and each day, it felt like function was slowly returning to my hand. It’s hard to tell if the steroids were the reason for the recovery. I began feeling more positive when I could do something new every few days – using a fork, strumming on my guitar, brushing my teeth — small things. Still, they each felt significant at the moment.
Ten days after my trip to the ER, I went to see the neuromuscular specialist in Virginia over Christmas break. They performed the EMG test and a full examination and finally confirmed the diagnosis of “Classic Parsonage-Turner Syndrome.” My doctor also said that my quick recovery was an excellent sign that I would make both a (relatively quick) and full recovery.
If it was not for my father-in-law (and advice from doctors), I would have never gone to the ER, and, likely, we would not have intervened with steroids when we did. As we never ran the A/B test on whether this had a big impact, we will never know if it was the reason I have such a good prognosis. However, I feel fortunate that I had a close family member to help with all of this. I also feel very lucky that I had the good fortune to end up in a small group of people who will both recover quickly and fully from this condition (hopefully).
Recovery
It’s mid-January now, and I’m in the process of recovery. I’ve been off the steroids for three weeks now, which I’m pleased about and doing occupational therapy 2-3x a week to help get back to a fully functioning and strong right hand.
I had my grip strength measured on my first visit. My left hand was 115 lbs which is on the high end of normal. Still, my right hand was under 50 lbs, which is weaker than the average 80-year-old woman, which means I still have a long way to go before I’m fully back to normal. For the first few weeks, I was focused on range of motion. Now, I’m spending more time building stability and adding some light resistance training with bands, finger putty, and hand bikes. I’m also starting to swim and play some more relaxed racquet sports like padel (but still unable to hit a reasonable backhand).
Day to day, I don’t feel disabled anymore, but I’m clearly much weaker in my upper body and have some asymmetry of strength even on my right side (top of the forearm, triceps and upper back all weak). After activity, I am typically quite fatigued and “good sore” in my affected muscles, which hopefully means I’m getting stronger! I am doing my best to be patient and slowly build back stability and strength over the next few months, and keep a positive mindset.
Takeaways
I wrote this (very long) post to share my experience and some takeaways:
- This is a rare-ish condition, and there are very few well-documented patient stories out there except for a few tidbits buried in Reddit forums. If this can help one person diagnose Parsonage-Turner Syndrome earlier or help provide any other comfort knowing someone else’s story, that’s enough.
- Not everything in our life is in our control. Random shit happens, and sometimes it’s good, and other times it sucks. It’s hard to accept that not all situations are causal and convince yourself that Y would not have happened if I did not do X. Acceptance of events that are potentially random for analytical people (like me) can be difficult, but this has taught me to be more at peace with these types of events.
- I have been fortunate to have a working body and mind for most of my life. I want to live each day with a little more gratitude for all the good things in my life, whereas my natural state is to focus on all the things I want/need to fix. I also now have more empathy for people living with a disability in a way that I did not before.
Aadil Mamujee 
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