We live in Tennessee and my husband has been dia, with a very rare disease called pachy meningitis he is being treated in Nash. Tn. took a long time to get a name for his diease most people and Doctors haven’t ever heard of it he is looking for someone to share stories and treatments with being is has no clinical studies it is so rare! has anyone ever heard or know someone that would be willing to share information about this disease even if you are a professional neuro doctor is ok!!!
Interested in more discussions like this? Go to the Brain & Nervous System Support Group.
Did anyone have a high white blood count
How did you get the doctors to listen to you ive been to er 2 times this week for migraines and today they sent me home and my head is still killing me
A number of you have posted about your experiences with pachymeningitis, and it would be great to hear an update from you all. I think your responses will benefit many members in this discussion.
@ewebster1981 – how are you doing? Did the migraine subside you had last week?
@tracyb – are you still in the wait and see mode you mentioned previously? How are you doing?
@megmor – are you still experiencing some of the improvements you saw with the steroid treatment?
Still in Wait and See mode. Having MRIs every July to check for progression. Next MRI is July, 2019. Regarding symptoms, my mild 24/7 headache may be getting a little worse, my eyes feel "heavy" and my stiff sore neck is worse (although I do have facet joint disease which may be a problem with the neck). Will be interesting to see if my next MRI shows progression. IMO, I don't feel as well lately, but my symptoms still don't warrant steroids, etc, but we will see when I meet with my neurologist. If there is progression, that could change my mind about treatment.
Hi all I hope you are all getting on ok .I have managed to taper off steroids in April ,so i have just been on mycophnooate since ,so my head made a significant improvement from the starting point of treatment at the begining of Jan 2018, the next MRI in April 4 months after starting showed massive improvement ,but not complete resolution.I have had 4 MRIs since and it has remained stable ,I've had two bouts of headaches and face pain both lasting 6 weeks ish and then it seems to resolve and the scans always say no significant change so who knows what the headaches are about ,so that's me stable ,I'll take that ! I Would be keen to hear how you are all getting on Meg
Hi..I'm 71, I live in VA and was diagnosed with Pachymeningitis in August 2018, at Wake Forest. Treatment with steroids almost killed me. The only symptoms I had was loss of hearing. It was so drastic an MRI was ordered for my brain. Thus the Pachy diagnosis….fast forward to 2020 I got a second opinion at Duke and was told it was not Pachy, but a brain infection. It went away and has now returned. Still, I have never had headaches, very little vision loss and I'm thinking maybe 3rd x the charm..and asking for another opinion at Mayo..Currently, I am on no medication and will refuse steroids. Any thoughts out there??
Pachymeningitis is rare.
You are going to a good place (Mayo) where you might have a thorough lab evaluation,(repeat MRI?)and a diagnosis.
Let us know.
I was curious if anyone has had a seizure or been diagnosed with Epilepsy as a result of this disorder?
Take care all,
I live in San Francisco Bay Area and was also diagnosed with ideopathic Pachymeningitis In 2016. They first thought it was meningioma in the cavernous sinus area affecting the TN and a few other cranial nerves. Treated twice with gamma knife, however, after the second gamma knife in 2014 I did not feel well for over two years. Dizziness, shooting pains, headaches, blurry vision, hearing loss and facial numbness. The inflammation spread throughout my dura(right and left side) and a craniotomy was performed for a biopsy. Treated with steriods for 6 weeks and felt a little better but came right back plus i have type 2
Diabetes. Then treated with rituximab infusions x3 and so far that works but I need treatment every 12-18 months. Let me know if you have any questions.
I haven’t been diagnosed with seizures or epilepsy. The shooting pains from TRigeminal neuralgia seems like seizures but I don’t think they are since my doctors haven’t mentioned that.