Thursday, February 24, 2011

Frustating Health Update

This week I went in to get my test results from the neurologist, and also have come down with yet another virus. I'm miserable and frustrated and just not great company.

The good news: nothing showed up on the tests. No MS, no weird arteries, nothing in the spinal fluid, no tumors, or aliens (that we have the technology to see.) This isn't just good news, its incredibly fantastic news.

The bad news: still no diagnosis and it felt as if the neuro hadn't really even glanced much at my chart from when I was there 3 weeks ago until Monday. She re-asked questions (and not like she was testing my abilities in doing so) and had me do certain things again, gave me a prescription (for pain-which has never been part of my conversations with her, nor is it my primary focus) and said come back in 6 months. There were other things that really, really bothered me as well. She basically said that the a brain biopsy would be the next test-which she doesn't want to do and neither do I-at all, ever. She doesn't want to treat me for the vasculitis because of my age. My frustration with all of this is that I continue to see doctors and seek answers and am put off to wait-for months at a time-because they aren't getting results from the tests. Meanwhile, I continue to detiorate at a fairly rapid rate. If the past six months are any indication I could lose even more brain function and more control of my body.

The downside of these kinds of illnesses is that just because the tests don't turn anything up, it doesn't rule out the disease. So, no signs are good, but I still don't have an answer. I'm not being given information on how to be proactive about this, just being told to wait. Meanwhile, my body continues to fail as does my mind.

All of this has made me see (again, as I needed to relearn) how important it is that I am eating right and doing what I can to be as healthy as I can.

I'm surprised that in my visits, I am not being given information on living healthier, I am not being given information on what I can do to help myself with my brain function and mindy/body coordination, just given prescriptions and sent off to wait.

Plan of action is to get into Mayo, where an entire team of doctors will be working together-which definitely does not seem to be happening for me at the moment-and hopefully helping me figure out how to be proactive with whatever is happening to me.

No comments: