Pachymeningitis?

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.

Thank 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.

I am a 68 year old, otherwise healthy female just diagnosed with Pachymeningitis. My main purpose for seeing my Dr. was because of cognitive impairment. Foggy, slow processing, loss of executive function, short term memory loss with amnesia like occurrences. An MRI was ordered and my pituitary gland was seen to be large for my age. A brain MRI with contrast showed thickening of the dura. I have had headaches, mostly mild with increasing occurrences for over a year. Annoying but manageable. I started getting sharp piercing pain in my right ear. Occasionally same sharp pain w headache. Full work up was done to find cause of the brain findings. Blood work, imaging and spinal tap. This over about a month’s time. All negative for secondary cause. My neurologist wants to start infusions and then oral steroids. He is seeking a second opinion from a specialist in a neighboring city but admits there aren’t studies to give much direction. I’m anxious to hear about anyone else’s experience and treatment. So far my symptoms are mild but I certainly don’t want to have this condition progress. Wishing all the very best in this journey.

@mered At this point, I have had no treatment other than physical therapy for balance issues. My neurologist said the side effects from treatment could be worse than my symptoms. He retired over a year ago and I have not sought out a replacement. I suspect that will change as symptoms worsen. I wish you the best. It helps to know there are others out there.

Thank you for responding! It is a little unnerving having so little information on this. I am starting to have slight balance issues as well, they seem to occur when I turn my head. I would describe it as “feeling a little tippy”. I have developed tremors in my hands, most noticeable in the morning.
I’m interested that you are not receiving treatment and it is reassuring that a watch and wait approach could be reasonable.

72 and diagnosed this year. For me it has affected my sight and I go monthly to have it evaluated. Seeing neuro immunologist as now considered idiopathic as every test comes back normal. Interesting to hear about PT for balance-really do not want the steroids!

@77smith77

My neurologist hasn’t suggested confirming my diagnosis with a brain biopsy but wants to start the same treatment you discribe. I know of others who have done well long term with steroid treatment for other autoimmune diseases so your treatment experience gives me confidence. I certainly want to enjoy my quality of life for as long as possible. All the best to you.

@mered would you mind sharing how long it has been since your diagnosis? In hindsight sight did you have symptoms before the eye pain and for how long?

@mered The lack of information is definitely unnerving. I would describe the balance issues in the same way. My balance is slowly getting worse and I have started using a hiking stick outdoors. It does feel related to the movement of my head. There have also been periods of vertigo that have thankfully cleared up. I still have positional vertigo that prevents me from lying flat, so I haven't had a MRI in well over a year. When I still had a neurologist, they were doing them every couple months. The hearing and tinnitus in my left ear worsens and then improves a bit. I guess it concerns me that I'm really no longer being monitored, but when my primary doctor offers to refer me to a new neurologist, I am hesitant. I think I'm concerned that I would get someone who would have more radical views and I really don't want to go through all the testing again and feel like a guinea pig trying various meds. And so, I've been doing the best I can. I no longer felt safe on my 2-wheel bike, so I purchased an e-trike. It involved a bit of swallowing my pride, but I live near a wonderful bike trail and it gets me out in nature. I pedal for exercise, but use the pedal assist on the four hills between the trail and my home. It will be sad to pack it away for the winter. So nice to hear from you. Thank you.