My name is Curt. I’m a father, husband, educator, & so much more...my disease is just another part of who I am. My disease is NOT me.
I was diagnosed with Relapsing Remittent MS on Nov 15, 2017. After a missed diagnosis in 2007 and many reassurances that lightning doesn’t strike twice, I have a rare heart disease called HOCM. So, I basically ignored invisible symptoms and when I couldn’t ignore them, my doctors treated only the symptoms, never finding the cause. Now I’m in a bad place physically, difficulty walking, double vision, etc. Mentally I’m exhausted with worry about the disease and financial issues.
I'm right there with you on the fear part! I was diagnosed back in October of this year. I started with brain lesions shortly after brain surgery (different problem) back in 96. I don't know why it took so long to get my dx. I always knew it was a possibility but the doctors just did the wait and see game....until I started falling and it effected my mood. At different times throughout the years the lesions would make changes but they just continued to watch them. About 7 years ago I had problems with one eye and got the dx of optic neuritis. Still they waited until now. They ordered an MRI and this time I have 15+ brain lesions and 2 are permanent. I believe the doctor called them black holes. I'm still trying to wrap my head around the official dx. Very scary.... Indeed! Have you started on any medicine? I will soon be starting Ocrevus. Prayers for you!
Hi Curt...I totally get and understand where you are coming from. I found out about almost a year ago....after years of being told my difficulties were "all in my head", they were pretty real to me. We have alot in common, your profile picture reminds me so much of a friend of mine here in Maine....it's uncanny...lol.
This is scary, no doubt, and it would be unrealistic to pretend otherwise. Reaching out here may help. I'd suggest doing some research into options and ms information, but focus on what is happening *now*, not everything that could happen later. Think about some dietary and complementary care that might lesson your stress. I do accupuncture, which I find totally relaxes me for days. It could, for you, just taking 10 minutes to sit and breath when you feel yourself stressing out. Look into the resources here for medication financial resources if that is an issue. Everyone here is with you.