Mayo Clinic Connect
Anyone diagnosed with pacheymenegitis? Interested in treatments, diet and supplements and any information.
Liked by shosey, cgrammie2, nadas
What is pacheymenegtis?
Hello @elizabethbryant and @shosey – welcome to Mayo Connect. There is currently a Connect discussion you might want to follow on pacheymenegitis – https://connect.mayoclinic.org/discussion/pachymeningitis/. You can also find more information on the following sites:
I am copying @cgrammie2, @mern, and @praymond234 who have commented in the discussion above in case they can provide more information.
Liked by Colleen Young, Connect Director, jrt26
Hi @shosey and @elizabethbryant,
I’d like to add my welcome too; I see that @johnbishop has given you some great information regarding Pachymeningitis.
As you may know, it is quite a rare illness, and an MRI will typically shows it to be a thickening of the intracranial dura mater, (the tough outermost membrane covering the brain and spinal cord), when associated with an infectious, malignant, or rheumatic systematic disease.
@elizabethbryant, @shosey, could you tell us a bit more about your interest in Pachymeningitis?
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I’m just trying to get my life back on course. I’ve attempted to go back to work but not certain how long that will last. Need energy, cognitive skills are lacking, vision and hearing is worsening. I’ve recently reduced my prednisone, taking medication for seizured. I need any advice for natural supplements. Employment issues, anything at this point.
Ray my husband can talk with you about his journey.He has had this for several years he came out of work short term went into long term then they retired him and then they put him on early Medicare 63 years of age. It started with fluid around his heart, they did a window to the heart to drain it for over a week.He had gone to the ER and they kept him to do a stress test on him come Monday, on Sunday evening late his heart rate dropped the rushed him to ICU he had the heart surgery on Monday,we stayed for over a week it was a blessing he was in the hospital when his bp dropped to 70/40 when they moved him to ICU several doctors worked to get him stable so they could do the surgery and drain the fluid that was chocking his heart. That was May 2011. He recovered from that and in July he started getting head aches his Pcp tried to treat it with blood pressure medications after several weeks the headache was getting worse she sent him for a MRI the Pcp called before we got home told him to go back to the ER he had meningitis, not sure which kind but that’s where it all began and the headache was unbearable by this time when we got back to the ER they started running test lots of test spinal tap in 3days he had 2 spinal taps and 2 MRI they could not tell what type of meningitis he had but they knew the pain he was having with the headaches he went on high doses of steroids, and many more drugs. He will have to tell you all of them he had just turned 62 was talking retirement but had a feeling he needed to keep working until they put him on oxycodine every 4 hours for his pain.
Liked by Kanaaz Pereira, Connect Moderator
He went through some really rough time we went through so many changes light was a problem with his eyes I had to block all the light out at home he paced the floor from the den to the bedroom over and over for days trying to get relief but nothing helped if the pain got ahead of his meds. Always a trip to ER and another week to 10day stay he went from no muscle control falling in the floor, swolling problems, he saw things that were not there like bugs in the bed, someone behind the bedroom door, did not want to go back to ER but he finally agreed his liver functions were off the charts that was why he was seeing things not there. One time he was in the den his voice sounded like Elmer Fudd. That was another exciting trip. The hospital we go to here is a universay medical center so all the students had to come back to here him talk when he spoke to his mom she asked what in the world is wrong with your voice,not seeing him she thought he had a stroke,told him to go get it checked out and he was not going back to the ER again. Mom got off phone call in reinforcement his older brother told him to call and tell him to go get it checked out,he didn’t need to be hard headed he said you all are against me lets go lol so another trip and stay for another 10 or more days. Every time I took him they kept him for 5to 10 days I had him at the ER in 2012 we made 10 trips and they admitted him every
Ptime but1 they have him a shot or morphine and sent us back home!! It has been one hell of a ride back and forth trial and error…many medications changes and MRI’s. they did not know what to treat him with other than strong narcotics to easy his pain. More later….
I’m praying for him!
How is he doing now? I hope that his headaches are reducing. I had them for a long time, now the headaches are gone. I hated the steroids started at 60mg and now at 10mg. Hopefully will be off soon. I have been taking rituxin infusions every 4-6 months.
So far, I’ve been okay. Much further along from 1-2 years ago. Completely lost most of my daily living skills but now most restored. Now continue to have some vision and hearing loss.
Keep me posted on his health.
Please know that Gods Way of Taylor, Texas is putting Ray on our prayer list.
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