9.30.2009

extremely boring yet somewhat dramatic medical update

okay, it's clear you people prefer to hear about the drama in my life rather than look at my pictures ;)(sorry sheena, but how else do you convey you are teasing? i hate it too, and yet there it is!)

here's the problem, i prefer to post the pretty pictures and pretend life's just dandy and moving along as planned. only it's not, so i suppose i'll tell you about it. it mostly revolves around my health, specifically my MS. i've been having a relapse since mid-may. remember the patch? argh. the symptoms subsided for a while, but in the past month or so have been getting stronger and slowly moving through my body. i am now numb/tingly/i-don't-even-know-how-to-describe-it up through my chest plus my arms. it sort of feels like i'm wearing a corset-all tight and stiff. it might have been easier to say my neck and head are feeling normally? i feel like a stiff old lady when i wake up, which is quite entertaining for steve as i shuffle through the kitchen with my hair awry. that is all somewhat expected, but lately i've also been feeling like i was hit by a train in my sleep. my quads and calves, which are essentially wasting away, are surprisingly sore. i'm eating everything i shouldn't (yes, meat, for shame, and lots of it. and chocolate because at least i can still taste wonderful things that make me happy for five seconds.), but despite that i'm still sort of wasting away. i weigh less right now than on my wedding day, a number i tried very hard to get to (i'm not the only one that was terrified to be seen naked, right?). meaning this is weird. really, really weird. but i hadn't ever skipped out on the steroid iv treatments in the past, so up till yesterday i was just under the assumption that these symptoms are really what MS is all about and i had been lucky in the past. maybe true, maybe not.

you see...track back to december 2005. i have just had my second set of MRI's which will be compared to my first taken in may 2005 at the onset of my symptoms. i had also had a lumbar puncture. my doctor brought me and steve (it's not steve and i, but please don't make me give you an english lesson in the middle of all of this;) into her office to explain to me that i indeed did have MS. she reviewed the findings from the MRIs and, in passing, mentioned a "syrnix" on my spinal cord which extended 5 vertebrae as well as a protrusion on one of my dics. no big deal- she basically blew it off saying it's just like a scrape from some sort of trauma and moved on with my MS diagnosis (no hot tubs or showers, no exercise, no anything). oh, and here's an antidepressant (i didn't take it). it was grim.

since then, as you know, i have been doing pretty well. i switched doctors to one who advocates alternative and natural medicine in combination with modern/traditional medicine. the day i first met with her felt like i got my life back. or at least some control over it. pregnancy and nursing seem to keep the MS under control and until this summer i haven't ever had a relapse that has really affected my daily life. i met with my doctor in may at the first sign of symptoms, and she mentioned, as though i was supposed to know already, that my lesions are on my brain stem. um, what did you say? yes, apparently my lesions are in the worst place possible, yet somehow my original doctor failed to mention that and allowed me to pursue the most mild therapy option (it was my choice, but i clearly didn't have the facts i needed in order to make the right decision. i definitely should have started something more aggressive). but because of our financial situation (i.e. no insurance), the best option for me was clearly to get pregnant now and start an aggressive therapy later-which would have been perfectly timed to steve's graduation and a job with good insurance. but i wussed out-how could i justify having a third kid when i only have two semi-operating arms? what if this pregnancy didn't work magic on my MS like the others and i instead was left with one more kid that i can't care for the way i'd like to? so...we're still going back and forth on that. luckily, though, we are back on insurance and have more options.

which brings us back to now. i called my doctor last week and told her (well, the receptionist because i have yet to meet a real live doctor that will actually speak to patients over the phone) i was pretty sure if she didn't start me on steroids within the week that i'd be in a wheelchair. that was motivation enough to get me in to see her yesterday. okay, i wasn't that lucky, i had to see the PA, who i've seen before and don't mind. at any rate my only goal was to get steroids because i'm not sure i want to start on a therapy yet if i'm still considering more children soon. she would do the trick. she reviewd my MRI's from 2005 and again casually mentioned the syrinx. i decided i wanted to know more and she again just explained it as some thing that lots of people walk around with and never know they have until they have an MRI for something unrelated. she led me to believe it could have no affect on my health, but that they could remove it through spinal surgery and 'why risk that?'. i left the office with orders for the three-day steroid iv therapy and three MRIs. that's going to be a fun 175 minutes lying flat as a board half-naked!

i started the iv therapy yesterday and am not feeling the results yet. i swear i usually feel them right away. i am experiencing the lovely side effect of insomnia and a slightly icky tummy and headache, though. while feeling antsylast night, i decided to google "syrinx," which immediately revealed some shocking information. a syrinx can lead to a condition called syringomyelia (SM). symptoms include things like: oh, everything i'm experiencing right now! granted, a lot of the symptoms are also those of MS, and my LP did positively prove i do have MS. i'm not arguing that fact. but i'm blown away that three doctors (at least) have now seen my MRI which indicates i have a syrinx that spans five vertebrae (that's big) and have not seen cause for alarm or further investigation. i also found connections to scoliosis, which i happen to have a mild case of. syringomeylia is usually found in patients with scoliosis curving to the left (which mine does). i'm just wondering how all these doctors are blowing this off. and i'm really steaming.

so...what now? i'm finishing the steroids in two days and am scheduled to have the three MRIs. i don't know what i'm hoping to see there-well, i do know, but i'm not going to kid myself that the news will be good. i'm obviously progressing. but the good news is that there is a chance that a lot of these more severe symptoms i'm having are stemming from the SM and not the MS. and SM can be fixed to a degree (with an obviously risky spinal surgery). problem is that i have to convince my doctors of the condition that they are just sweeping under the rug as a normality. wish me luck.

also-i know some of you/some of your friends have neurologists you like/love and i'm definitely on the market (preferably ones in the salt lake area), so can you all do a little connecting with your MS pals and get me some referrals?

15 comments:

rockchelle said...

I hope that the MRIs coming up show that the steroid treatment helps. My prayers are with you!

BTW, i love looking at happy pictures! I am always showing Adam, look at this picture she took here, I want to be able to do that!

gina bina said...

I wish I could reach into your body and pull out the ms and then ring its neck with my bare hands.
For now, I'm hoping the 'roids kick in!
XO

sheena said...

I've always thought the best part of the MRI is when the tech says" don't move, don't fall asleep, don't even swallow".

good luck with that.

how bout this one :/

mostly Stacy said...

love to hear an update, I'm sure you cringe a little when asked, "so, how are you feeling?" I hope you can get some answers.... then relay those answers onto your loyal readers. :)

lisset said...

oh buddy. i am sending you buckets of love. i wish i could take on half of this episode for you so we could at least share the load, but seeing as how that's not a possibility- i'm hoping that you get answers very, very, very soon.

buddens said...

Wow. That's nuts, and crappy. Hopefully they figure it all out! I used to work in the neurophysiology lab in Vermont ... not so close to Utah, but I'll see what I can drum up from my old neuro friends!

I do have a couple of friends in Utah who have MS, so I'll see there too. Good luck!

bulkleybunch said...

sucks rocks!!!! so crappy. so sorry.

Chocolates for Breakfast said...

oh my goodness! you have a lot going on in that body!? know that you are in my prayers! keep pursuing this! love ya!

Lillian said...

Liz I am so sorry you are dealing with so much. It's hard enough taking care of two little ones. One thing I've learned about medical help is that you have to be super pro-active, which it sounds like you already are. Doctors don't know everything and it seems sometimes they only do as little as they have to. I will say a prayer for you.

Jamie said...

I'll talk to my sister-in-law and find out who her doctor is. She's been going to him for years. Like you she found out she had MS in her mid 20s and right when she was in the middle of having kids. Now her 3 girls are all teenagers and she's doing okay. I use the term loosely. She too is really skinny and get tired very easily, but she's still walking around and doing pretty good. Anyways I'll get the referrals for you and email you. Sorry to hear about all this. Hope you find some relief soon!

Bri!!! said...

Oh Liz,

It's is so heartbreaking to hear about a beautiful active girl suffer from this horrible disease. It really sucks. You are a stud.

Way to go on being proactive about your health. It's so frustrating to deal with doctors who treat patients just as another number because they become desensitized. Everyone has a story, is a mother, sister, daughter, friend. There are some amazing doctors out there, but sadly they are very very hard to find.

Have you seen a doctor at the University hospital? If not, I would highly recommend it. They have the manpower and new research that could make the difference. You will have to deal with annoying residents, but they actually might be the ones to figure it out because they haven't been able to get "stuck" in their ways yet. The U of U is a very respected program, so I would definitely give it a try.

I have a friend who has MS in Provo. I have not been in contact with her for years, but I will try to find out how to contact her. She was also a nurse, so I'm sure she has some good info.

Good luck and hang in there. You will be in our prayers.

Wildings said...

I'm so sorry, I truly hope you find some answers and some sort of relief! If there is ever anything I can do even though I live in BFE please ask. I would love to help!

Peter A. Greene said...

it sucks that this challenge has come to you. you and your family are in my thoughts and prayers.

Laurie said...

:(

Alexis Sasala said...

Hey, Liz. I was just swinging by to see how your beautiful children have grown (love the Halloween costumes, BTW) and saw the news regarding your health. I'm so sorry to hear that you are having to deal with this. I just wanted to stress to you (as a nurse) how important it is to let your providers know what you have researched and what you feel in your gut. Sure they are the professionals, but no one knows your body better than you. I wish you the very best and will keep you in my thoughts and prayers.

Alexis