Tuesday, August 12, 2008

New frustrations

Saw my new neurologist today. I eagerly anticipated seeing him. He wasn't the one I wanted to see, but he was the one who comes to my area. I waited 1.5 HOURS after my scheduled appointment time to see him, and then, he spent exactly EIGHT minutes with me. Answered a minimal amount of my questions. Heck, didn't give me time to ASK any! He wants to do testing and then see me again. (No MRI, I can't have one with the cochlear implants). He wants to do a Visual Evoked Potential Test (VEP) and a Lumbar Puncture. (Already said NO to the Lumbar Puncture). Studies show that 85-90% of people with definite MS and 58% of people with probable MS have abnormal VEPs. However, looking at the reverse it means that 10-15% of people with MS can have NORMAL VEPs. I never could understand having tests done that aren't definitive. They can't give a firm diagnosis OR rule a condition out. (Like a Lumbar Puncture for MS). At least the VEP isn't invasive. It's simply having electrodes attached to your head while you watch a black and white checkered TV in a dark room while you wear a patch over one eye, then the other. They measure the electrical potentials that travel down the optic nerve into the brain. What they are looking for is a delay during the transmission of the electrical potentials in the brain. The slowing indicates a demylinated area. Of course, if your demylination isn't in that area it won't be detected. Hence the normal VEPs with 10-15% of MSers. The ONLY definitive test is the MRI for MS (other than a direct biopsy of a lesion). The only definite way to monitor lesions is an MRI. If you can't have one (like me), then most Doctors seems to want to subject you to all kinds of tests. Of course none of those tests will give them answers. The VEP I don't mind. No way am I doing the Lumbar Puncture (better know as a spinal tap). The only thing a spinal tap WILL tell them is that I don't have meningitis or an infection. (Which they aren't looking for anyway)! Can you tell I'm frustrated?? Apparently the next step after the VEP is a follow up visit with him and a referral to start the work up for Novantrone treatment. (I added a link about Novantrone). The journey continues.

1 comment:

Marybeth said...

Good for you Kim for saying no to the lumbar puncture. My neurologist also suggested a lumbar punture after I had a biopsy of the two lesions that were sitting on my brain in 2003. I said no as well. Fortunately for me, my neurologist listens to me and said he was fine with my decision.

Doctors really need to listen more carefully to their patients, who understand the disease they are living with much better than the doctors. You are being a very proactive patient....Good for you-in the long run, that will get you better treatment.