Last Friday I had a complete physical with lots of blood work and a liver function test. All the results came back today as normal! I’ve had no negative effects from the Idebenone and vitamins I have been taking so now to Bascom Palmer Eye Institute on July 8th to see how much my vision has really improved. Stay tuned….
Congratulations! So happy for you!! We’ll keep cheering you on!
More good news. I am eagerly waiting the update in July.
So pleased that everything was ok for you. Please carry on with your bloggs it gives hope to Tom. Tom is still taking the idebenone and all the vitamins that you are taking. He has had a set back with his right eye, but his left eye is showing signs of SLIGHT improvemet. Tom gets very low mood when he has a set back which is to be expected. He is going for hyperbaric oxygen therapy every day for 1 1/2 hours. I think he is expecting too much too soon and things don’t happen overnight.
As Moms, the mood swings can be very devastating to us and to them. I’ve had days I didn’t know if we would make it through. I tried to take his pain but found I was grieving as much as Brian was. I guess it’s normal but it sure didn’t feel very good. We didn’t have any hope back then so my attempt to cheer him up normally back fired and I ended up feeling worse. The day Brian found the facebook page I had to take my Mom to the ER and I didn’t want to leave Brian alone, I had never seen him like that in 7 years, I wanted to call the suicide prevention line but had to get my Mom to the ER so I begged Brian not to do anything stupid while I was gone and prayed alot that day, for Mom, for Brian for Me! Brian had just finished one year of his Idebenone and Vitamins, it has been a very gradual increase in vision, he will tell me there hasn’t been any change for a while and then something will pop out at him and he can see something new. Brian also lost his right eye first and then the left six months later, his right eye was almost blacked out, and he had a limited amount of peripheral vision in his left. Within six months after losing his site, his eyes switched and his right eye became the strong eye with quite a bit of peripheral vision and his left eye was almost blacked out. They have stayed that way until last year when he started all of this. Tell Tom not to give up hope and that Brian had lot of changes the first year, I don’t know if it’s normal but that’s how it was for us. Brian also experiences eye pain that it is so bad it keeps him in a dark room for days at a time. Other people with LHON say they don’t experience this but Brian has had the headaches/eye pain since the beginning and did not have migranes or headaches before becomming affected with LHON. He says it feels like someone is inside his head pulling his eye balls into his head. I can’t say I get it but I see the pain he is in and no amount of meds help.
Hang in there Jackie, it’s a long journey!