This is copied from my Facebook note posted on October 17, 2014. It was a rather in depth post, so I felt it would just be better to add it here verbatim rather than try to write something new. Just trying to update the blog with some stuff that I felt needs to be here. (I have back dated this blog post to reflect the date, but this first paragraph was written in July of 2016)
“I’ve been trying to figure out the best way to do this, and I decided this was just the way. There is way too much for a status update. There are way too many people that I want to tell, so I thought this would be the easiest way.
I’ve been dealing with headaches for a while now. I’ve been thinking maybe it was stress (although I don’t really have much), or not drinking enough water. But I finally couldn’t take it anymore and decided to see the doctor (well, nurse practitioner, actually). He decided that an MRI of the brain was in order, so after some arguing with the insurance company (and winning rather easily), it was approved. Then my fantastic coworkers slipped me into a spot when they likely should have been eating lunch. (and I’d wanted to make sure to get the test done when one of two radiologists were there to read it because I’m more comfortable with them and asking them questions about what’s on the images)
On Wednesday, the np came over and asked if we could go somewhere to go over the results. (it helps to work next door to the doctor’s office). I pretty much knew that wasn’t a good sign. If it had been my old doctor, it would have been nothing, he always came over to give good news. But I knew that wasn’t gonna be the case here. Feel bad for the guy, honestly, this is the first time he’s seen me and he gets this. heh
The telling part of the MRI report is this: “The findings are consistent with demyelinating disease and most likely represent multiple sclerosis.” I’ve actually been dancing around the MS diagnosis for years, honestly. In Houston, numbness/diminished feeling in my legs and feet got me 4 hours of MRI (with poor Jon sitting in the waiting room) which showed nothing, and then a nerve conduction study that also showed nothing. In Buffalo before I left, there was talk of a spinal tap until I lost my insurance and it got cancelled. So I can’t say I’m surprised with the diagnosis, but I am kind of scared shitless.
I have an appointment on November 5th with a neurologist to see what to do next. Half of my coworkers had recommendations for neurologists, and the doctor I’m seeing is in that group. (he’s the one with the newest appointment, the rest are a wait till December or even April!!) So I feel like I’ll be in good hands. That doesn’t mean I’m not up for other information, other looks at the study, etc. I’m trying to figure out a way to put the study and viewer up on my server, but I haven’t quite gotten that far yet. So I’m just gonna put up some of the pictures from the study and a few bits from the report.
I’m generally fine. Other than the headaches and the fact that I haven’t been able to feel my right little toe in, oh…. a year? (yeah, yeah, I know… but I really didn’t want to have to go through a nerve conduction study again and that’s what I figured they’d do. I REALLY didn’t enjoy it at all), I don’t know that I have any other symptoms. I wonder if I still have the numbness/diminished feeling and it’s just become normal to me now, but not sure how to tell. And, really, I’ve been clumsy my entire life so it’s hard to tell what might be me and what might be the MS. 😀
I know people will have lots of questions, and honestly I do too. Don’t think I’ll really know anything until November 5th when I have my appointment, and likely not until after that when more tests are done. (Can anyone say “This is Spinal Tap”? heheh) I’m thrilled to have a good support team between my friends, Jon’s family, and my coworkers. I have lots of people that know lots of stuff. (Incidentally, Chrystal, I’d be thrilled to talk tomorrow if you have time, we’re gonna be on the road for a while so I’ll be unoccupied). I have lots of people that care and will stand by me, so it’s good. I won’t deny that I’m freaked the fuck out, but I know I’ll make it through.
Now for the technical stuff:
“The images demonstrate that the patient has multiple bilateral small white matter lesions. Several of the lesions are located in the periventricular white matter oriented perpendicular to the ventricles. The findings are consistent with demyelinating disease and most likely represent multiple sclerosis.”
This correlates to the images I put up below.
Other than that, the report is actually pretty ok. Was pleased to see this next bit, and hadn’t even thought about this as a part of MS:
“The optic nerves and optic chiasm have a normal appearance. There is no evidence to suggest optic neuritis.”
Considering I really don’t know how I’d do without my eyesight, this was great to hear.
I’ll be sure to keep everyone updated when I learn more. I have had some people tell me to not necessarily “believe” it all and that it might come out false, and I’d love that to be the case. I’m not a medical person so I can’t know that these spots are exactly what he says they are. But I know the quality of our MRI machine and the quality of our radiologists so I’m preparing for a little bit of a lifestyle change. I will say, though, I have known and known of people with MS that you wouldn’t know there was anything wrong, so I’m not taking this as a “life sentence” at all. It’s just another thing, like my bipolar or my need for eyeglasses. It is scary because it’s new and there is so much “bad” heard about it, but I guess I’ll see how much of that is true. :)”