yes it is lonely and they know so little about this disease. I WAS I could share my phone number and name with you
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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….
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.
@shosey you are very welcome my phone number got blocked, I wanted to share with everyone what he has been through and get your journeys as well. I am trying to find how to send in a private message my phone number and to share all the test, trial and errors we have gone through.
Thanks and prayers to you and yours,
Ray and Debbie
my husband has been in remission for 300+ days headache free, not much going on at the moment he did have aortic valve replaced in 2014. so light is at the end of the tunnel! as for me my health is not what it has been all the stress is playing on my illness RA, H.B., now stage 4 kidney disease? I see a specialist in Jan for the latter. It is going to be either the diabetes or my RA causing the kidney problem. But we will see what can be done with my illnesses. Prayers for all with these rare diseases, praying they find what is causing and how to treat them! Thanks for asking, Debbie and Ray
Please private message me for my contact information likeI said we live in Tennessee and would love to talk with others and share our story and treatments some good others not so good….what works for one might not for the other! Seems it is trial and error!