Saturday, June 29, 2013

I spoke to my doctor yesterday. He looked at all my MRI's and he is ok with the way they look. My brain MRI has not changed at all. He didn't agree with the radiologist's report, but I trust his judgement since he knows what he's looking for. As far as my cervical spine, not as good news there. I have chronic enhancing lesions on my spinal cord. We are not sure why they are still enhancing. I am having another test done next week called a Nuclear Medical Gallium Scan. He is looking to rule out something called Sarcoidosis. 

Thursday, June 27, 2013

I was able to get my MRI done on Tuesday this week instead of Wednesday. I picked up the report on Tuesday night. Very confusing report, so I sent a copy of the report to my doctor in NY to clarify. He wanted to see the actual images. I sent the images overnight to him yesterday. He has them now, and I'm just waiting on a call back. Prayers are always welcome. Thanks!

Friday, June 21, 2013

Not feeling well this week. I spoke to my doctor on Wednesday and he ordered another MRI of my brain and cervical spine. I'll have that done on Wednesday. For now, he increased my steroids back up to 60mg.

Monday, June 17, 2013

Follow along

For some of you, this will all be new and I apologize for not being able to tell you in person. I am hoping this is an easy way to keep everyone up to date with my health.

I have been struggling with headaches since the end of 2011. It was a very long process and I've been in and out of hospitals and ER's and too many doctors to count. I've stuck myself with needles, and swallowed thousands of pills. But I've been lucky to have seen some of the best doctors in the US, and I feel like I am in the right hands with my current doctor.

To bring you all up to speed, I have been diagnosed with Multiple Sclerosis and most recently with a rare disorder called Susac's Syndrome.
Susac's Syndrome is an autoimmune disease that affects the microvasculature (tiniest arteries and capillaries) of the brain, retina and inner ear---resulting in varying degrees of ischemic injury (injury due to decreased blood flow and oxygen) to these tissues.

This means that my own immune system is mistakenly attacking part of my body.

I am on a treatment plan that consists of a double dose of IVIG every four weeks, oral steroids, Cellcept, and a handful of other pills and vitamins.

Right now, I am working on slowly tapering the steroids without causing harm. It turns out that this is a painfully slow process. It feels like one step forward, two steps back. It is really testing what little patience I have left.