Connect
Pachymeningitis?
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Brain & Nervous System Support Group.
Connect
I also have Pachymeningitis. Diagnosed by open brain biopsy at Uof Penn Philadelphia. Massive pain behind R eye. Treated by pulse dose IV steroids in Neuro ICU at Penn. 14 MRI's and 14 Cat scans that year 2021. If you go to a local ER you have to tell the Dr what it is. Needed a lot of Physical therapy speech and occupational therapy to function again. Received Rituximab IV's afterward. I will be 80 next month. Got to drive my BRZ racecar twice last year. Still followed by occasional MRI's. Have the number to call for the PennStar Helicopter to avoid local hospital. No symptoms at this time. Wish you well.
-
Like -
Helpful -
Hug
1 ReactionThank you so much for your response. I was beginning to wonder if there was anyone else out there. You give me hope, although I pray I don't have to go through all that you have.