Grrrr. Another rant

[jifr]

I have seen so many Gilenya users posting that they have had fatigue.

I had fatigue before Gilenya and it was miserable. The day I started Gilenya - my fatigue increased 4-fold. While on Gilenya, my fatigue was even more miserable.

When I mentioned this to my neuro NP? She looked at me like she was baffled and said that wasn't normal.

Me? I was dumbfounded.

Not normal? (Keep in mind that they think everything with me is NOT normal).

Grrrr.

I asked the specialty pharmacy people who deliver it. They said that fatigue was one of the symtoms noted in the trials. I've asked other Gilenya users about their fatigue and, while some people don't have fatigue issues, I've run into many more users who say they have fatigue issues.

Why would the Neuro NP disclaim the fatigue as related to the Gilenya? I am furious about that.

This is NOT in my head! Is she not informed? Is it not something they've had to deal with before and they are trying to lump me in with everyone else's experiences...and discount me experience?

I want to scream at her! Just because it might not be normal in their experience doesn't mean it's not happening!

I truly think this is why MS patients got the rap they got before MRIs! People did not believe us! Especially if your symptoms are not something people can see! MS is devastating enough and I cope but THIS is what makes me want to CRY about it.