1. < Brain & Nervous System

Pachymeningitis: Anyone else?

Posted by cgrammie2 @cgrammie2, Aug 11, 2012

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.

jrt26 | @jrt26 | Jan 11, 2023
In reply to @artist77 "Hello, I was just wondering how you did on that infusion medication…I did an IVIG with..." + (show)
@artist77

Hello,
I was just wondering how you did on that infusion medication…I did an IVIG with the medication Octogam (sp), and the side effects sent me to the ER. I had massive migraines, extreme high blood pressure, chest pains, trouble breathing and vomiting. It was awful. I have Sjogren’s Syndrome and Pachymeningitis.
I hope you’re feeling better,
Liz 🙏🏻
I hope you’re

Jump to this post

Thank you for your reply.
Sorry to hear you had a terrible reaction to IVIG. I had minor cough and itchiness the first few minutes into the infusion but they stopped the treatment and gave me max dose of Benadryl. Waited about an hour and then they restarted the IV at a much slower rate that worked and was able to finish the full dose but just took longer.
You may be very allergic to these types of infusion medications. I hope you are feeling better too!

REPLY
1 reply
artist77 | @artist77 | Jan 11, 2023
In reply to @jrt26 "Thank you for your reply. Sorry to hear you had a terrible reaction to IVIG. I..." + (show)
@jrt26

Thank you for your reply.
Sorry to hear you had a terrible reaction to IVIG. I had minor cough and itchiness the first few minutes into the infusion but they stopped the treatment and gave me max dose of Benadryl. Waited about an hour and then they restarted the IV at a much slower rate that worked and was able to finish the full dose but just took longer.
You may be very allergic to these types of infusion medications. I hope you are feeling better too!

Jump to this post

Thank You…yeah, I’m very sensitive to a lot of medications. Have a happy new year

REPLY
1 reply
jrt26 | @jrt26 | Jan 11, 2023
In reply to @artist77 "Thank You…yeah, I’m very sensitive to a lot of medications. Have a happy new year" + (show)
@artist77

Thank You…yeah, I’m very sensitive to a lot of medications. Have a happy new year

Jump to this post

Happy New Year to you! Please reach out anytime even if just to vent or talk.

REPLY
trenks | @trenks | Oct 4, 2023

Hello, all!

I am a 52 year old female and have just been diagnosed after an MRI taken last month. I have no headaches but do have some vision changes. I have no idea what to expect with this disease. My mother died of PSP, so anything brain-related terrifies me. PSP is rare, but there was more information online that was discernible to lay people.
I am having a second MRI and Lumbar Puncture in two weeks. If anyone is still in this group, how are you doing. Are you able to enjoy your normal daily lives and activities?
Thank you for your support and advice.

REPLY
View MoreView Less
Please sign in or register to post a reply.