Pachymeningitis?

Posted by gilby53 @gilby53, Mar 22, 2025

I am 71 & was diagnosed with idiopathic pachymeningitis a year ago. I began to lose the hearing in my left ear. ENT sent me for a MRI. Then sent to a neurologist. Confirmed pachymeningitis. Multiple MRIs. Lumbar puncture showed high protein level in spinal fluid. Sent to infectious disease specialist who ran all sorts of bloodwork. No obvious cause. Have developed vertigo, balance issues & some issues with my gait. My neurologist just retired. A frightening, rare, lonely disease. Used to being a very active person. Definitely affecting my life. Not knowing what to expect.

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gilby53 | @gilby53 | Sep 20 8:19am

In reply to @seh129 "72 and diagnosed this year. For me it has affected my sight and I go monthly..." + (show)

@seh129 I will be 73 in November. Mine is also considered idiopathic and primarily affects my hearing in my left ear and balance at this point. I have physical therapy once a week for 45 minutes. We do balance exercises and then ultrasound and massage of my neck and shoulders, which seems to help. I also have exercises they have given me to do at home. I also hope to avoid steroids.

77smith77 | @77smith77 | Sep 20 10:18am

In reply to @mered "@mered would you mind sharing how long it has been since your diagnosis? In hindsight sight..." + (show)

@mered 6 years since diagnosis. symptom free for about 5 years now since the pulse dose steroids at Penn followed by Rituximab as outpatient. A lot of PT to regain balance. Follow up MRI is good now. No symptoms before eye pain.

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