Diagnosis: Multiple Sclerosis

video from World MS Day 2009

Some days are hard, others are almost normal. Since I became ill last year I have wrestled with so many ideas and emotions. The doctors were optimistic that I would slowly improve and see the end of my neurological troubles. I tried to believe them because of the hope they offered but I was never quite able to. I was thrilled when I moved from walker to cane to walking unaided but I knew in my heart that I hadn't heard the last of my illness. Unfortunately, I was right. Although I am one of those insufferable people who love being right, it was the emptiest of feelings.

In May I got sick again, I had a second attack. At first I tried to give other explanations for my symptoms, perhaps allergies or some sort of sinus issue, but as my eyes began to hurt so much that it was better to just keep them closed and my body ached to where I couldn't get out of bed for 3 or 4 hours in the morning because I just couldn't manage to sit up, I knew it was time to see my neurologist. On the day of my appointment for a new MRI the tremors began in my right hand. It was so demoralizing. I had worked so hard to be healthy and had thought I was succeeding and all of the sudden I couldn't write my name without my hand shaking so badly that I looked like a drug addict. My neurologist diagnosed Multiple Sclerosis but wanted me to get a second opinion from a specialist to be certain. After my original attack of symptoms last year and all of the confusion in trying to find the culprit, it was important to everyone that we get it right.

My mom and I drove the 2 hours to the specialist who is highly regarded in our state (someone actually called him an MS guru) for my second opinion. The appointment went well until the disc containing all of my MRI images from the past year wouldn't open. I went home without an opinion and I've spent the past 6 weeks keeping my original diagnosis between myself, family, and a few close friends. I got confirmation that it is, in fact, MS a couple days ago and I've tried to write this post numerous times since then. There is so much I've been wanting to say for so long but was waiting until I was well, it looks as though I should stop waiting for that.

I am in no way happy I have MS but since I have been sick and will continue to be to varying degrees for the rest of my life, I am thankful that what I do have is something well known. There is a lot of research going into MS. I have medication options to help with not only the symptoms but extending the time between attacks. The life expectancy and quality of life is much different than it was 28 years ago when my grandma passed from this disease. The outlook for my life is so much brighter. I am strong and I will be okay.

I've had a lot of time to thoroughly examine many of my thoughts on life and what I want out of it. I'll post more about that and my treatment plan in the future but right now I just wanted to get this out there. I've felt so stifled these past weeks as I kept this news to myself, waiting and wondering, not wanting to say anything until I knew for sure. Having a diagnosis has released me from this burden and given me such peace of mind. Learning of my MS has been surprisingly liberating. Who'd have thought?

Goodbye 26.

Today is my 27th birthday. I've decided to treat today like it is the beginning of a new year, a new era. The 26th year of my life was the most difficult year I've experienced thus far. I spent 11 months of it being ill. I can't remember a single time from 26 where I was happy. Sure, there were glimmers and brief moments of happiness but even those were weighed down with huge amounts of stress, illness, and fear.

My 26th year was full of being afraid I was going to die, that I wasn't going to ever improve, that I would never find myself again, that I'd always be an empty shell of my former self. 26 was terrifying and lonely. It wasn't lonely because I didn't have people who loved me around but lonely because I had to say goodbye to the person that I had been. 26 was the year I had to let go of myself, of everything I was, because it didn't exist anymore. I had lost my identity to my illness.

For my 27th year I hope to find myself. I hope to water what roots of the old me that I have left and to mourn the pieces I won't ever get back. I hope to grow new branches of who I am. I hope to encourage happiness in my life and in my heart. I will get that back and I will let go of the fear I've lived in. 27 will be better, I get to start over.

So please, instead of wishing me a happy birthday, could you just wish me a happy new year, and I will do the same for you.

This is Your Brain on Drugs... CRACK!

Did anybody else watch those awful PSAs in school? My brain doesn't quite look like a fried egg but apparently it still doesn't look normal. Last Friday I went up to Portland for another set of follow up MRIs. A preliminary review of my scans showed that all of my lesions are gone except the one in my cerebellum that has been giving me so much trouble these past 9 months. It is still there but it has shrunk and is pretty faint on the MRI. Awesome news!

and now to take the wind out of my sails

Today I got a call from my neurologist, my scans had been read and while most of what they originally told me still holds true, another random little lesion in my brain is also still present. We've never really worried about or focused on this lesion because I had other, much more concerning lesions giving me all kinds of problems and this one doesn't seem to be giving me any obnoxious symptoms as far as we can tell. We're keeping an eye on it now though because it has become "more pronounced" than it was before. Originally they said I wouldn't have to come back but now they're recommending another set of follow up scans in 6 months.

I'm still taking this as good news. The lesion that was down my spinal cord is gone (leaving behind some spinal cord damage that should hopefully heal over time), as are the ones on my optic nerves. It's just my brain that is still lighting up the scans. Three hours of MRIs isn't fun but I'll take it over a lumbar puncture any day.

I was excited to share my good news with you and had a post written about how I only had the lesion on the cerebellum left and it was almost gone and then I got the call that while the news is still good, it's not quite as good as we originally thought. What a buzzkill. I'm so ready to be done with these lesions. Please think some good thoughts for me that this other lesion will change its mind and become less pronounced or at least that it won't continue on its current path.

Medical Bills are Rough.

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I have strong opinions on the American healthcare system but it would take me all day to type them out and I really just want to talk about my recent experience with how overwhelming hospital bills can be. When I first got sick I put off going to the E.R. because I knew that even though I had insurance, it would still be expensive. When I finally did end up going after about a week of throwing up everything I ate, I was treated very poorly, accused of being on drugs, and sent on my way with no help. When I received the bill with the blood and urine tests they did (which came back clean and then they asked me if I was sick because I was depressed) I was livid. I had tried to avoid going to the E.R. not because I thought they'd be giant a-holes but because I didn't want the stress of the financial burden that comes with an E.R. visit.

I've started getting my medical bills and it's really overwhelming. The stack seems to be a mile high. I talked my dad into giving me one of his filing cabinets so I can try to organize and make some sense of them. I get one bill for the doctor, one for the facility, one for the procedure. Now multiply that by 4 different facilities and about 20 doctors and it feels like a never ending mountain of bills. It'd be so much easier if they just sent one bill per stay but they don't, which makes it really confusing. I have to sort through them and figure out what the heck is going on. Some of them can be paid online but most can't. One hospital has sent me a separate bill with a different patient number for each time I was there. Way to make it easy.

One thing I noticed when going over the bills is the price gouging that happens. The local hospital billed $4,800 for a brain MRI with contrast. Another hospital billed closer to $1,600 for the exact same procedure. How is this allowed? I understand that different places charge different amounts but that is such a large discrepancy and definitely makes me feel like I'm being taken advantage of.

I'm so thankful that I have insurance, otherwise these bills would be stressing me out. I'm also "lucky" that my income is well below the poverty level for my state so there are assistance programs I can apply for. Just last year I was living without health insurance hoping that I didn't get sick. I can only imagine the amount of stress not having insurance would have added to an already stressful hospital stay. It's especially saddening for those who do have the added stress, since avoiding stress is generally part of any recovery. I used to do credit applications at a previous job and there are so many people who have had to file bankruptcy because of medical bills. Getting sick in America is scary.

More Crappy Medical Procedures.

I got a new inhaler last week and some cough syrup with codeine because the cough I've had for almost two months just won't go away. When we were in Portland for my brain scans we had a couple hours to kill between the scans and getting the results so we went to hunt down some donuts for my uncle. We were in the donut shop and I started coughing and then I let out this terrible scream as my rib separated from the cartilage. I scared the guy behind the counter, I think he thought I was having a heart attack. It's amazing the pain I can handle when I'm prepared for it and know it's coming but if it's unexpected pain I'm kind of a baby.

Since we've already tried asthma medication, steroids, and allergy meds and none of it has helped, my doctor wants to send me to a specialist. They are going to stick a camera down my throat. I don't know why but this really freaks me out, a lot more than getting spinal taps did. Please think some good thoughts about my cough going away soon so I won't have to have the fun camera procedure. The codeine has helped a lot with the cough and mostly with the constant pain in my ribs. Anytime I move or take too deep of breath it hurts but the very worst is sneezing. Sneezes are violent and there is no way to stop them. I've been choking my coughs down for weeks because of my rib pain but sneezes are like awful little tornadoes that just do whatever they want.

Have any of you ever had the camera down the throat (technical term) procedure done? If so, how was it?

Good News!

Yesterday morning I got to wake up early to go to the clinic on the waterfront (so beautiful) and lay in an MRI machine for 3 hours. I swear, my nose never itches until I have to not move for 3 hours, then it just goes crazy. After my morning scans, we killed a few hours and then went back in the afternoon for the results. The bad news is that my lesions are all still there but the super awesome news is that every single one of them has gotten smaller, some of them significantly! I don't have to go back for scans for another 6 months. I'm hoping by then they will have gone away completely. In the meantime, I continue exercising my leg and hope the rest of my symptoms continue to improve.

It's Scan Time.

Today we're heading back up to Portland for Jake's neuro consultation at the VA hospital and tomorrow I get new brain and spine MRI's at OHSU. It's nice we were able to schedule our appointments on consecutive days so we only have to make one trip. My scans tomorrow are at 8 a.m. and then I have an appointment in the afternoon to go over the results. Here's hoping my lesions have either shrank or disappeared!

I have toilet paper shoved up my nose, because I'm classy.

My sweet niece and sister drew this for me, I'm saving it forever and ever. 

I really miss my blog, a lot, but I've been spending most of my time sleeping lately. Every little thing wipes me out, from going to the grocery store to just cooking dinner. I try to cook things that I don't have to stand and stir the entire time, so I can sit down and just check on them periodically. Sitting down is my new best friend.

I went to the doctor a week or so ago for a cough that just wouldn't go away. We were hoping it was caused by allergies but I had to go back yesterday because it is worse and now he's thinking cough variant asthma, although he is also testing me for a blood clot in my lungs and whooping cough. I did get some new meds though so hopefully those will help.

Last night I coughed until I puked which was something new and completely disgusting. I wish our bodies had some sort of alarm that warns you that you're going to puke later, so you can watch what you eat beforehand. I think that would really take some of the horror out of puking. Some foods are just a lot worse coming back up than others (pizza, I'm looking at you).

It's time for flu shots, so if you are into immunizations, don't forget to go get yours!

I'm Going to Whack People with my Cane

I've graduated to a cane!! We found my cane at the Goodwill and it had some return address labels stuck all over it with the previous owner's name and address. I decided it needed a washi tape makeover. I love how it turned out, it looks like it belongs to a 26 year old, not a 70 year old. Walking with a cane is kind of weird. I get a lot of looks but I'm used to it, I got a lot of strange looks with the walker. I thought about wearing a sign around my neck that says, "I have brain lesions!" Not because I mind the staring, but to alleviate people's curiosity.

It was pretty much the best day when my PT said I can use my cane if I wanted. I still have my walker, it's really good for when I do something where I might end up tired because my walker has a seat on it. Not only that, I "graduated" from Occupational Therapy this week and my PT said I'll likely have one last appointment with her because I've progressed so quickly and have been doing so well that I can continue to do my exercises and stretches on my own. I also saw my local neurologist and he was really happy with my progress. He wants to keep an eye on me though so I go back in two weeks.

This week was a good week! I even finished reading a book and my eyes haven't been hurting the last two nights. Usually by the end of the day my eyes ache so badly and get really blurry. It's due to inflammation on my optic nerves, but I think it is getting better. I'll write all about the book later, it was good. Some stranger recommended it to my mom when she was at the library getting some books for me. I love when strangers do nice things.

It Got Worse Before It Got Better.

I've been missing again. It's because I was back in Portland at the hospital. I'll give you the short-ish version. I was on a medicine that was making me very very sick. My doctor admitted me to the local hospital to take me off the med. Then the neurologist told me I needed to go back up to OHSU hospital in Portland (5 hours away). You can only get a bed if a doctor refers you and a doctor up there agrees you need to be admitted. So when they say you need to go, you don't argue, you get in your car or the ambulance and you go right then. When my mom and I got up there, they did more MRIs and found another lesion, a really big one, down my neck and a good portion of my spine. So if you're keeping track, that's a lesion on my cerebellum, lesions on my optic nerves, a small random lesion in my brain, and a ginormous lesion down my spine. I like to rack them up.

I also had some other developments that weren't so fun. In addition to my previous issues of being really weak from not being able to eat without vomiting, having problems with my balance, being dizzy, etc. all of the sudden, I couldn't feel my right leg anymore. That's not quite accurate. The sensation in my leg changed. When the doctor took a safety pin and pricked my right leg, I couldn't feel it. My leg just felt warm and tingly, from my toes to my hip. That was one of the scariest moments of my life. I'm 26 happy and healthy one moment, I get the flu and a few weeks later my leg feels like a log. What the heck? So the doctors have decided that I have post viral encephalomyelitis. At least that's what I think he said. Really they aren't sure what's wrong with me and that's one of three things he said but he thinks it's the most likely so we're going with that. With auto immune issues, it's hard to give a definitive answer.

So what is post viral encephalomyelitis? I don't know. From what it sounds like, I had the flu, when the flu virus left my body something else in my body decided to go all crazy and attack itself thinking it was helping attack the virus, giving me these lesions. Gee thanks body, I appreciate it. So I've been home for about a week. I have in home physical therapy which is so nice. My physical therapist is super nice and awesome and I've been doing my exercises like crazy. The best part, the sensation in my leg has changed again. It still doesn't feel like it should but it feels a lot lighter to me, which makes it easier to walk. It used to feel like a stump I was dragging around. So that's good. They told me it could take 6 months to a year to recover, if ever. I may still have problems with my legs, my eyes, my thinking, for the rest of my life, but let's hope not.

The other issue I was having was that my skin felt like it was itching all of the time. I felt like I needed to scratch my skin clean off. I didn't care if I had flesh hanging off, and I was scratching, so hard that I was breaking blood vessels. I didn't have a rash or anything and lotion did not help. Finally I had a doctor say that it was probably a nerve problem and he prescribed me some medicine that was developed to help with seizures but it never did, but the people with seizures realized it was helping their nerves. So now I take it 3 times a day to calm the nerves in my body, otherwise I have this obnoxious itching issue.

So that's what's been going on in my world. I've just been working hard exercising my legs, trying to get muscles to return. Last week I could barely walk with my walker. I'd get 5 feet and have to stop. Today my gait is almost normal. I can't even tell you how good it feels to make progress so let's hope it continues.

Scared to Death

Hello friends, it's been awhile and I miss my blogging buddies. If you read the last few posts you know I've been ill. Well, my regular doctor returned from vacation and squeezed me in. He decided to do an MRI just to be sure it really was a virus that settled in my inner ear but when my scan came back there were abnormalities. To be specific, there were lesions on my brain. I was immediately referred to Oregon Health and Sciences University Hospital in Portland. My mom was by my side the entire time and we drove the 4.5 hour drive immediately. I was scared to death but trying to be strong for the benefit of my loved ones.

Once there, they did another MRI, this time with contrast and found more lesions. The largest is about the size of a walnut still in its shell and it's right in the area that controls balance, which is why I've been having such a difficult time walking and with not being able to keep my food down. I'm sharing the abbreviated version today but they also did a spinal tap to check the fluid around my brain. At first it looked like an infection so they put me on a ton of IV antibiotics which really harmed my body. When further tests indicated it wasn't an infection they took me off the antibiotics. In the meantime they started throwing out scary ideas of what it could be, tumor, cancer, multiple sclerosis. I have never been so terrified in my life and I'm crying writing this right now. My grandma passed due to complications of MS and watching my mom's face when they said that was an option was so heartbreaking. They eventually mostly ruled that out along with a lot of other really scary things. In the end, after doing a second MRI and a second spinal tap they still didn't have any conclusive results. Their best guess is that it's some kind of virus and I just have to wait it out. It's incredibly frustrating.

There was a week in there where I couldn't eat without it immediately coming back up so I lost a lot of weight which is really bad because of how small I was to begin with. Now my legs have atrophied and I can barely walk. I have a walker but even going from the living room to the kitchen wipes me out. I've learned a lot during this ordeal though. I was trying so hard to hold in my fear and anxiety because I didn't want to worry my family even more than they already were. I have an incredibly close family and they all checked in everyday. What I realize now is that it's okay to be scared to death and it's okay to tell your family, they will be there to support you and to go through it with you, my friends did an awesome job of making me feel loved, it's okay to let others be strong for you when you can't be strong for yourself anymore. I've always been independent and now I have to rely on others for basic necessities.

The doctors are saying if it is a virus like they think, there is no medicine for viruses, you just wait them out. They're treating my symptoms as well as they can. But now I'm so weak I have to have someone help me in and out of the bathtub. It makes me feel so pathetic but I am so grateful for their help. If I didn't have them, I have no doubt I'd injure myself badly. It's just hard to put aside my pride and accept the help. Especially knowing it could be months before I'm well. Although it wasn't quite a near death experience, it could've been if my doctor hadn't returned from vacation, I was slowly wasting away. Because of this experience I want everyone in my life to know just exactly how much I love and appreciate them and that includes all of you who left sweet comments, they really meant a lot to me. It's going to be a long time before I recover so I don't know about anyone's religious beliefs but if you would send you prayers, good thoughts, happy vibes, or whatever it is you feel comfortable with, I could still really use them. Thanks so much!

The Third Doctor Knows What's Up.

We went to a third doctor today, because I needed to. The first doctor was nice but not incredibly thorough, the second doctor was kind of a dbag, and the third doctor ended up being Asian, which was a good sign. As my family is Asian, we tend to put more stock in what Asian doctors say, you know, because of all of the stereotypes of Asian people being smart and hardworking, for the most part, in my experience, those rumors and stereotypes are true. So I was excited when today's doctor happened to be Asian.

Yesterday was by far the worse day of my sickness. I puked up EVERYTHING I ate. I puked up my anti-nausea meds, I puked up water just as soon as I drank it, I even puked up a tiny piece of bread I had tried wrapping my meds in and the 3 whole fries I ate from Jake's chicken nugget meal from Wendy's. It was awful. This morning was the same thing, I even managed to throw up on my feet. Talk about miserable.

I told all of this to the new doctor, including how all of the skin inside my mouth is peeling off, I get dizzy if I even move my head from side to side let alone stand up and I looked right at him with tears in my eyes and said, "Please, help me." He thinks I have a viral infection of the inner ear. That I did originally start out with the flu, but that the virus migrated and settled in my inner ear which gives me vertigo which leads to all of the puking. He prescribed me a few things. One is an anti-vertigo patch I wear behind my ear to not get motion sick, the other is a rapidly dissolving anti-nausea pill that melts on my tongue in a matter of seconds so I don't have to swallow it and puke it back up before it can even have any effect. So far all I've tried eating are popsicles, saltines and water but since none of it has come back up, we're in business. Tomorrow I might get wild and try for some macaroni salad. Who knows?! My regular doctor who has been gone this entire time is supposed to be back in the office Monday and I'm to go in and check in with him as well, as per Asian Dr.'s instructions.

The only bad thing is that there is no antibiotic or anything to get rid of the virus. I just have to wait it out, which will be a lot easier with some food in my belly. Thanks for all your well wishes guys!

Life is Being Ridiculous.

We try to avoid the 4th of July in our house as fireworks are one of the biggest triggers for Jake's PTSD. Last year in Idaho they shot them off right across from our house which made them ridiculously loud but at least I got to watch a few out the window. This year, since I'm still sick, I just laid on the couch and listened to them. Jake wore headphones with the music cranked way up and played video games, like every 4th. My mom is making some kind of either macaroni or potato salad tonight so at least we won't miss out on the best part of the 4th of July - the food.

I have a strained relationship with the 4th of July. On one hand, it's supposed to be a celebration of our freedom and the fact that freedom meant so much to us that we were willing to fight for it. On the other hand, there are thousands of people out there like Jake, who were in the military and did follow orders into war for this country, who view the 4th of July as the worst day of the year because it reduces them to hysterics. Jake says it gets worse for him every year and this year he felt like digging a foxhole and jumping into it. It doesn't help that people shoot fireworks well before and after the actual 4th. He's basically a prisoner in the house for weeks because if he's outside and hears fireworks, he drops to the ground in a panic, thinking he's being attacked.

As mentioned above, I am still ill. My head feels a little clearer everyday but my stomach is still in a lot of pain and I still feel weak and exhausted. On facebook I likened myself to Frodo Baggins in Return of the King. I'm wimpy, pathetic, and can barely walk on my own. It's ridiculous. My doctor is out of the country so I went and saw a very nice but not very thorough doctor on call who never called me back with test results. Then my mom took me to the ER because 10 days with a temperature and not eating is really bad. After insinuating I was on drugs and then taking my blood and finding that I'm not, they decided I probably just have a virus and have to wait it out. They also told me to check back with my regular doctor because I might have peptic ulcers. They told me to get Prilosec and to eat anything I can manage, even if it's pizza and soda for every meal because I need to stop losing weight. All I've managed to eat the past couple of days was a cucumber, half a baked potato, half a cup of veggie broth, some saltines and water. I'm so frustrated with being sick. I want to be back to my old self.

Summer Illness.

I have been sick on all of my days off this week. Boo! I've pretty much lived on my couch for the past 3 days, which hasn't helped my house get any cleaner but that's okay I guess. At least I didn't puke on anything. Even though I've been sick, I'm chicken sitting for my uncle who lives right next to me so I had to go out and feed his chickens, cats, and koi. Jake did it for me on the days I felt particularly awful but it felt good to get out in the sunshine, even if it was just for a short time.







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