Turns out this news is well over a year old, but I just found out about it today. Here’s a little backstory…
Back in February 2008 I was fortunate to be able to get an appointment with Dr. John Griffin with The Peripheral Nerve Center at Johns Hopkins Medicine. This came after experiencing bizarre neurological symptoms since August of the previous year, visiting several local doctors, and enduring numerous tests. My symptoms included numbness and intense burning over 95% of my body.
My experience at Hopkins was absolutely amazing, and I had never met a physician like Dr. Griffin. He spent a LONG time with me, was incredibly kind and reassuring, and ultimately diagnosed my previously unexplained condition. He told me that I had a very rare peripheral nerve disorder called Small Fiber Sensory Neuropathy. In addition to this, he also told me the following things about my condition:
- It is an auto-immune disorder that was most likely caused by a common virus like a cold or stomach bug. The immune system literally attacks/destroys the small fiber nerves in the skin causing the intense burning and numbness.
- The reason for this defective response by the immune system currently cannot be explained.
- Continued damage should cease within the first 5 years of the disorder.
- It should never affect my large fiber nerves, which means that it would never impair my muscles or my movement.
- The symptoms could be largely controlled/suppressed by taking daily medication.
These last two things ultimately gave me back my life. Several months before my first symptoms I had fallen in love with running, but was unable to run after the symptoms began. As a matter of fact, I didn’t want to do much of anything after the symptoms began, and fell into a deep depression.
After a couple of weeks on the medication I was largely symptom free. Also, other than an occasional flare-up, I have remained symptom free until now, and obviously was able to run again.
Today at work the topic of my experience came up when a coworker was talking about some neourological issues his father is having. During the discussion I tried to look up Dr. Griffin and found the following article in the Baltimore Sun…
Dr. John W. Griffin, Hopkins neurology expert, dies
April 19, 2011 | By Frederick N. Rasmussen, The Baltimore Sun
He was a prolific researcher and writer who was highly regarded for his study of axons, the nerve fibers that conduct electrical impulses
Dr. John W. “Jack” Griffin, an internationally acclaimed expert on diseases of the peripheral nervous system and founding director of the Johns Hopkins Brain Science Institute who had also headed the Johns Hopkins University School of Medicine’s department of neurology, died Saturday of bladder cancer at Gilchrist Hospice Care.
The Cockeysville resident was 69.
This news made me sad, but also caused me to think about the incredible blessing that Dr. Griffin has been for our family. R.I.P. Dr. Griffin….And Thank You!