Wednesday, March 11, 2009

From The Mouths of Babes ...

When I was working registration at the school auction, the mom of one of Ellie's best friends told me that Ellie and Sydney beg for a playdate every time she picks up her daughter. (Scott has told me the same thing!)

Nichole said that when she saw Ellie at school a few days earlier, she told Ellie that she needed to talk to her mom before the girls could have a playdate.

Then, she tells me, Ellie responded, "Oh, don't call my mom. My mom is sick. Call my dad instead!"


I worry about how my health issues are affecting her. A 4-year-old shouldn't have to tell people that her mom is too sick to set up a playdate. (And it's not true anyway -- no matter how sick I am, I'm still the family social coordinator! I keep the calendar that keeps us all straight.)

The New York Times ran a story a few weeks ago about children who are caregivers for their chronically ill parents. And I don't mean adult children -- I mean kids who should be out playing with their friends or doing homework rather than administering shots and taking care of their parents in other ways. I'm not sure I can imagine a worse horror story ...

It's become a family joke that I say I'm "pooped" and Ellie asks me why I didn't go to the potty first. (She honestly thought I meant I'd done it in my pants the first time she heard me say it. Now she knows it has another meaning, but she likes to go through the conversation about it each time.)

But she also asks me if I "have energy" before asking me to do things for or with her. And she asks me how I'm feeling some days, cupping my face in her hand like I do when she's sick.

I guess I need to be more stoic, since I don't want my preschooler worrying about mommy. But I also learned the hard way a few weeks ago that I can't just ignore my body's limits either without paying some severe consequences.


So I saw my internist today. I think my optic neuritis is getting worse, which I guess is pretty common before it improves. We're considering putting me on steroids again, but I'm going to wait a couple more days before making that call. I hate steroids -- they make me crazy, especially at high doses.

She also is ordering an MRI of my brain. I had one done in October 2007 that was "unremarkable," but it was done without contrast and did not include an "MS protocol," whatever that is. The insurance company needs to pre-approve it before I can be scheduled, but I hope to get it done in the next couple weeks.

Meanwhile, she's doing the paperwork to try to get me in to see an MS specialist at OHSU. Apparently there's a lot of hoops to jump through before I get an appointment. :P



Typically optic neuritis should be treated aggressively with Solumedrol. Eyesight is too precious to mess around with, but I understand what you mean about the steroids making you crazy.

Getting more MRIs with contrast is a great idea. Almost surprised that this hadn't been done if MS was considered a possibility for you. I hope that you find some answers this time around.

Aviva said...

Hi Lisa,

Thanks for your comment! Really? Aggressively with Solumedrol? That's the IV form, right? Wow -- I had that when I was hospitalized back in July 2007 when I first got sick. Major crazies!!

I suspect the major problem is the only doctor dealing with this is my eye doc and my internist. The MS center my doc wants to send me to is making her office jump through hoops to get me in. (Yes, I'm wondering why I want to go there too, even if it is supposed to be good.) It's sounding like they want a neurologist to already have diagnosed me before they'll take me as a patient, but if I were an easy diagnosis, I wouldn't be almost two years into a mystery illness. :P

I had read that, given time, optic neuritis will go away by itself but that steroids can shorten the length of time. Is that not true? If you have a reference/URL you can give me to, I'll pass it onto my doc. And I'll definitely be talking about it with her tomorrow!


It's true that vision problems with optic neuritis generally do resolve on their own and steroids help to speed up that process. But the IV steroids do help to protect against recurring episodes of optic neuritis.

Here is a paper that was just put out regarding Optic Neuritis and the Risk of Developing MS.

I set the link to go directly to the section which discusses a longterm trial in patients who presented with optic neuritis and underwent one of three different treatment protocols. The final outcome was that Solumedrol sped up recovery AND protected against developing MS (or rather delayed it) and protected against repeat optic neuritis in the years following.

And here's what the NMSS has collected on the topic of Optic Neuritis.

After I did Solumedrol the first time (which was 5 years after I had done high-dose oral steroids), it was horrible but I thought to myself, "ok, if I only have to do that once every 5 years, than I'll be okay."

Well, I had to do it again 6 months later. But knowing how bad it could be made it much easier to deal with the 2nd, 3rd, and 4th times around. I hope that you can get in soon to get those MRI scans (with contrast) to see what's going on. Being in Limbo is no fun.

Aviva said...

Wow, Lisa! You're amazing!

I can't thank you enough for giving me the link to that Cleveland Clinic Journal of Medicine article. I learned a lot from it, and I'll fax it to my doctor tomorrow with that section highlighted.

I have to say I'm torn between wanting to hide my head in the sand and stop reading about this stuff because it scares me, and wanting to learn as much as I can because I've learned I have to be my own advocate. (Even with a great primary care doc trying to help guide me. I still have to advocate for myself.)

I guess what I found most interesting is that using oral steroids actually increases the likelihood of recurrence. Yikes!

The good news is I know they'll get me in quickly once the insurance company approves the expense of the MRI. They're very good about that. I just don't know how long the insurance company will take to process the paperwork. :(

Thanks again, Lisa. Medical limbo definitely sucks, but support from the blogging community helps so much. And man, I'm sorry you had to go through the solumedrol FOUR times. I hope it's a long time before you need it again -- if ever! And I suspect you're right that knowing how bad it can be would help me get through it easier the next time around. It caught me way too much by surprise the first time. (And it didn't help that the nurses kept asking if I'd always had panic attacks and looking skeptical when I said I'd never needed anti-anxiety medicine before. Sigh. Or maybe I was just being paranoid ... the major doses of steroids definitely make me paranoid too!)

Laurie said...

Sorry things continue to be so complicated, Aviva. I hope you get some answers soon, and can get the MRI you need. It took a family member of mine a long time to sort out an MS diagnosis--it's certainly tricky.

I was on solumedrol infusions every six weeks for years and got to the point where I just accepted I'd be wacko for a few days and those around me learned to let it slide. It's literally a life-saver for me, which I try to remind myself when I'm going through the bad effects.

Anyway, good luck with all of this and keep us posted!!!