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Idiopathic 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. Not knowing what to expect.
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I was recently diagnosed as well but it has affected my eyesight in my left eye-which is how it was eventually discovered. All the labs are normal. Seems to not have changed since Feb when it first started.
@seh129 Thanks for your response. I wish you well. My hearing in my left ear worsens and then improves a bit. I've also developed tintinus in that ear. My balance and gait have worsened. I can't lie down for MRI due to vertigo and have not seen another neurologist since mine retired. From what I have read, there's not much they can do.
I have pachymeningitis that is caused by autoimmune. I was having intractable headaches and balance issues, then one morning I woke up with my left eye turned inward. They originally treated me with prednisone which helped with the headaches and my eye quickly returned to normal. I have since been moved to methotrexate.
Although those symptoms have resolved, I also have balance issues because tests show my cerebellum is affected. My balance has gotten better but is still only about 80 to 90 percent resolved. That's my new normal.
@markmanus How do they know it is autoimmune? All my blood tests, lumbar tests etc etc have come back in normal ranges - which is good news generally but no answer(s)/diagnosis is difficult.
All my blood markers were normal too. However, since I responded to prednisone, my symptoms were obviously due to inflammation. They then tapered me off prednisone to methotrexate, an immunosuppresant drug. Since that worked, they assume my symptoms are autoimmune related. Even though I don't have any definitive markers for an autoimmune diagnosis, they treat me as if I do. My physician thinks it's probably IgG-4 but again, I didn't test positve for that marker. That isn't unusual and could change in the future.