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← Return to Pachymeningitis: Anyone else?
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My hubby was diagnosed with pachy meningitis finally in Oct 2020. Back in July 2020 he began having terrible trouble with his balance when standing and walking. Since he had some ringing in his ears we started with an ENT. The ENT then referred us to a neurologist who prescribed the MRI that showed pachy meningitis. My hubby has had a lumbar puncture, CT scan, and numerous blood work done. We have ruled out so far bacteria, virus, fungus, autoimmune causes, plus tumors / cancer, etc. We are now seeing an infectious disease doc. My hubby feels like his double vision is getting worse so now we are waiting to see a neural ophthalmologist (there are only 2 in our area of San Antonio). He tried prednisone for a few weeks and it made him feel dizzier than he already is plus the weight gain. No more of that. Thankfully he is not in any pain but he can only walk with a hiking stick, and tires easily. It is good to hear that we’re not the only ones who seem to be “alone” with this diagnoses. Talk about the year 2020- this plus CoVid and everything else! Praying for treatment and complete healing for everyone!
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It is so hard to watch our loved ones go through this. I'm glad that others are on here that can share their symptoms, diagnosis, treatments and stories.
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@Iphillips May I asked what part of the dura or brain is affected by the inflammation/Pachymeningitis? Your husband may need to see a neurosurgeon instead that specializes in the brain stem or if anywhere close to the cranial nerves. I was also placed on prednisone 60mg daily taper down for a few months. However, the symptoms and inflammation came right back soon after stopping prednisone. Due to my type 2 diabetes, the team of doctors decided on Rituximab Infusions. So far I’ve had 4 sets on infusions since 2016 and that seems to help for at least 6-12 months. My cranial nerve 6 was affected which permanently moved my left eyeball inwards which caused the double vision. It corrected itself after about 8 months. Neuro Opthalmalogist is also a good next step. I had a neurosurgeon because they first suspected it to be a small meningioma in the cavernous sinus brain stem area. So I was first treated with gamma knife procedure then the growth/inflammation returned after 5 years. Hope some of this information helps you and your husband.