So I might be a little off. Off label that is.

Sorry for the lack of current info around here. Life has been throwing me some additional curve balls outside of the MS ball that I already had in the air. I will fill you in after I figure out exactly what is going on, but for now know that the things that are in the works are potentially hugely impactful for managing my symptoms and moving forward with my life.

All that aside, I had my follow up visit with the neuro yesterday. She didn't/couldn't give me a clear answer about why we did the spinal tap. Suffice to say that several of the protein strands they looked at are outside of normal range and are indicative of an active immunological disorder. I am pretty sure we already knew that, but now we know it even more? Who knows.

My neuro still wants to get me into a clinical trial. The one we were shooting for is temporarily on hold due to an ornery gatekeeper at the Primary Investigators office. I threatened to help her get out of the gate (since that is what I do for a living) but the neuro just laughed and said they hoped to have it resolved and ready for entrance exams by the middle of August. If not, she wants me to "bite the bullet" and start the Avonex without the financial support of the clinical trial. Ummmmm, yeah. If anybody knows where I can find $1,100 for my out of pocket cost for the first months treatment, be sure to let me know!

The best news that I got from her was that she was willing to write me a script for the anti-fatigue drug that I have been wanting for two months. I may or may not have gotten my hands on said drug a month ago and it may or may not have made a HUGE difference on the day that I took it. Now we just have to get my insurance company to pay for it. They aren't excited because it is pricey, not generic and we are asking for an off label use. In other words, the FDA knows that it helps with fatigue. However, they have only approved it for use in fatigue in shift workers and narcolepsy patients; not MS patients. Why that matters? I don't know. Fatigue is fatigue and I would like to stay awake for more than 4 hours at a stretch. And I think the people on the road with me would appreciate it too!

Here is to being off label!