Thursday, November 4, 2010

On To Another Path, Yet Again

So despite being just five years out of medical school, I kind of liked the multiple sclerosis specialist I saw today. 

At the end of a two hour appointment and exam, he told me he believed that I don't have MS and that I'm not likely to develop it, based primarily on the apparent stability of my brain abnormalities. "But I could be wrong," he said, leaving a door open because, as I learned previously, MS is one of those diseases that can never be completely ruled out. He's recommending I be sent for another c-spine MRI (my first and last was in 2008) and said if anything abnormal shows up there, he wants to see me back again. 

Meanwhile, he believes I do have something going on affecting my nerves and wants me to see a neuromuscular specialist to have several tests, including a thorough EMG (which I haven't had since the one I had in the early 1990s to test for carpal tunnel) and possibly some kind of biopsy to look for small fiber neuropathy, which he thinks might be the cause of my ever-growing list of weird sensory symptoms.

It was really funky. You know the weird sensation loss I've been having on the left side of my face since last spring? I'm not totally numb -- I have some sensation, but it's dulled, kind of like when I have dental work done and the Novocaine is about half-worn off. It feels like my cheek, etc., is made of rubber, and also like it's sagging, although it doesn't appear to be when I look in the mirror. I can even feel it in my teeth when I bite down. 

When he used a safety pin to prick me, I could tell him that it was less sharp on my left side of my face than the right side. But what really stood out for me was when he used a funky looking version of a tuning fork. I could totally feel the vibrations on the right side of my face. But on my left? I could feel the pressure from where its base touched my left cheek, but there were no vibrations. None, anywhere on the left side. When he concentrated on my forehead to see where, exactly, the dividing line was, I discovered that between my eyebrows, there was a kind of muffled vibration that I could just barely feel. If he moved to my right, it was very strong. If he moved to my left, it disappeared. 

So I've got the name of the best guy in town who deals with these kinds of issues. Interestingly, it's one of the names I was given by a friend's husband (who's a local neurologist but doesn't accept people he knows socially as patients -- which I totally understand!) when I had my episode of optic neuritis back in spring 2009 and he was telling me the folks he thought I should consider seeing, both to be evaluated for MS but also to look at my tethered cord and lumbar spinal issues. Somehow, that made me feel confident that I am being referred out to someone good.

So, well, we'll see. 

My OHSU appointment on Wednesday was at 9 a.m. and lasted for a little over two hours, so when I finally made it home, I had lunch and went straight back to bed after taking some pain meds to deal with the increase in pain from the exam, not waking up until 5 p.m. So I'll be calling to try to make an appointment with the new doc tomorrow, although I'm not sure I'll be allowed to until he has received my records. 

This investigation, if it's proved to be something I have, is unlikely to explain all my symptoms. But the incremental increase and spread of my weird neurological symptoms are scary to me, so I will be happy if they can figure out what's causing them and, ideally, make them go away. I'd even be happy if there's just a treatment that stopped it from progressing farther. But having a name? A diagnosis? That would be helpful all by itself.


Meanwhile, I'm still desperately seeking contributions to next week's edition of Patients For A Moment. The topic question is "What do you look for in a doctor?" and can focus on the search for Dr. Right; your experience(s) with Dr. Horrible or Dr. Mediocre, or why you stick with your current doc; a pro and con list or a wish list for qualities you like/want/have in a doctor. If you're a medical professional, I'd love to hear how you choose your doctors (because everyone's a patient at some point or has to choose a pediatrician for their kids), or what it's like to (feel pressure?) to live up to a patient's expectations or the times when you can't.

I hope those suggestions help inspire my readers who blog (but please don't feel limited to those ideas I listed!!). I've only received one contribution so far, and the deadline is Sunday, Nov. 7, at midnight Pacific Time (although I'd likely not be getting to work on it until Monday afternoon at the earliest so even if you're running late, drop me an email!). 

To participate, please send the following to me at

1. Your name (as it should appear)
2. Your blog’s name
3. Your post’s title
4. Your post’s URL 

And if you want to make my job even easier, you can include a sentence or two to sum up your blog post. 


Q said...

Hi Aviva!

I really wish I could come up with a good post to submit to the carnival - I just really am stumped on the subject. I feel like I don't have much say in picking my docs. I look forward to reading what everyone comes up with!

Lisa Emrich said...

Great that you probably don't have MS, but the search for an answer continues. I'm sorry to hear that.

I get the numb face thing. It's either a left-over from post-shingles neuralgia or comes straight from the MS.

Whatever the cause, it's highly annoying and disconcerting at times, isn't it?

Mine varies between - I hardly notice it; like something is touching my face and I can't wipe it off; very numb with the border being zig-zagged down my nose; to it feels "like an elephant is standing on my face/head." Neurontin helps.

I'd like to contribute something to the carnival, but need to actually write something. If I can get it done quickly, I'll send you an email. ;)

Sherril said...

I wanted to submit a post to the carnival but time got away from me. It was going to be a rant on a recent horrible experience with a PT. Maybe it will fit in better with some other topic on the carnival.

Thanks for hosting!