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Hi Denise,

I was so pleased to receive your post and as you wrote, it certainly makes a huge difference being able to connect with others suffering the same disease. The sense of isolation and fear of the unknown becomes much less of an issue. Joining DNA has made a big difference to my life as well.

I was extremely fortunate in having a good GP who wasted no time in referring me to my neurologist and I was diagnosed in early 2017. So far, I am up to 11 Botox injections and they are working well. Unfortunately, my CD is complicated by degenerative spine disease as well. My neurosurgeon is now looking at cervical surgery to release the trapped nerves there. I have had the maximum number of steroid injections into my cervical spine, but I am still hoping I can avoid this surgery.

The fatigue is really something difficult to manage and because CD is a disease that is not something others can see, it makes it hard for those close to you to understand. I am also finding my concentration is diminished and I am still trying to get through all the posts on the members forum.

Again, thank you for your post and I look forward to hearing from you again.

Kind regards