MS Treatment

I apologize for not posting sooner. I guess I figured that things have settled down and that everyone knew what was going on... Here is the update for those of you who I haven't seen: My doctor has started me on a treatment called Avonex. It is an intramuscular injection that I give myself once a week. I can inject in my thigh, or Matt or my mom can inject in my shoulder (not that that will ever happen!). This treatment does NOT treat my symptoms, which means that it will not directly improve the numbness in my body. It treats the progression of the disease and lengthens the amount of time between relapses. Once the damage is done in the nervous system (in my case, in my brain), it will stay damaged, which is why we cannot "fix" the damage. There are other types of treatment: steroid treatment is used to speed up the healing process if you are having severe symptoms-this is not used often as it is not good for your body, or they will also do specific treatments for symptoms. My symptoms (numbness) are considered "minor" and not severe enough to treat. Compared to other symptoms, I have the good end of the deal for sure.

My first injection was preceded by a training with a nurse who showed me how to do everything and helped me practice and eventually do the injection. I did my first injection in my numb leg and didn't feel a thing. Three hours later I started feeling achy and could tell my temperature was rising. About two hours after that, I definitely had a fever. I went to bed at that point, after taking a sleeping pill, and had an awful night fighting the fever and trying to stay asleep. I woke up the next morning feeling fine.

My second injection went much better. I waited until about 7:00 to give myself the shot and I pumped a ton of water into my body. Like hundreds of ounces of water, gatorade and propel before and after my shot. We had friends over, and when they left around 10:00, I still wasn't really feeling anything. At 10:30 I took some Nyquil, which helps me sleep better than the other medicine I took last week, and went to bed at 11:00 still feeling pretty good. I slept fine and woke up feeling good! I was pretty tired the next day, but what a difference!

My shot and the two needles. I of course only use one needle, but I have a prescription needle that is different than the one it comes with...


My needle is the smaller of the two. My doctor prescribed it for me. It is 1/4 inch shorter and a bit thinner than the other needle.

Normal... which is weird

According to my neurologist, all my tests came back normal... which is weird. I guess we always knew that I am "special." Usually MS patients have more than one lesion- I just have one huge lesion in my brain (which is why they thought it was a tumor), putting me in the 1% of "special" MS patients. We are going to get started on treatment, which means I will be giving myself a shot once a week, as soon as everything gets cleared through my insurance and we get our financial aid set up. It is so nice to finally have some answers and a plan.

I love plans.

The So-Called "Specialist"

On Friday Matt and I went to see the MS specialist, Dr. Kaplan out at LDS hospital (well, across the street). We were the first appointment of the day and got there at 8:15 AM. We filled out our stack of paperwork and waited. When we got into the exam room, we were met by the physician's assistant, Sally, who was very nice. She asked us a million and a half questions about my medical history, did some minor tests (can you feel this? is this cold? etc.), and talked to us about the crazy rollercoaster that we have been on this month. She couldn't believe it. Most people don't get diagnosed with MS after a brain biopsy.

Then she left. We waited. And waited. Finally the doctor came in. She told us that she couldn't be 100% sure that I have MS without some more testing. AHHHH! She wanted me to do another MRI (on my spine and neck) and have a lumbar puncture before she could determine any kind of treatment. She asked if I had any questions. YES! But I only asked one: Why can't we take it out? Because MS is a disease that breaks down the myelin sheaths that surround my nerves. The "blob" is really an area of damaged nerves, and if we took it out, I would be without those nerves. One question down, one million to go.

So we head out to the waiting room and wait. Duh. They schedule my MRI and my lumbar puncture and we have 45 minutes to eat lunch and get over there. We get there and... wait. Finally they take me up for my 90 minute MRI. Holy cow, sitting for that long without moving is really hard! Then we went straight downstairs to do the lumbar puncture. And guess what? We waited again. Finally the P.A. came in and did the lumbar puncture, which didn't hurt as much as I thought it would. It felt like I was burning in a straight line down my back and into my spine, and then it was gone. We had to wait for one hour in a recovery room before I could go home. I had to spend the rest of the night reclined, but I didn't get a headache or anything.

Poor Matt. He spent 9 hours in the doctor's office and hospital on Friday without anything to do. He burned the batteries on both our phones playing Grow. I told him to go home during my MRI but he wouldn't leave me. Such a good husband.

The worst part is that we are still waiting. I have my follow-up appointment tomorrow (Tuesday), so hopefully we will get some answers and maybe start some treatment! I would love to feel my body again!

Update on the Brain Blob

Again thank you all for your love and support these past few weeks. On Monday this week, we FINALLY found out the results of the biopsy.

Good news: The blob is not a tumor, which means I won't need radiation, chemotherapy, or surgery.

Bad/Undecided news: I was diagnosed with MS (multiple sclerosis). This means that I will have a lifetime of treatment... I'm not yet sure how I feel about this. Still having mixed emotions, although I have heard A LOT of stories that are supposed to make me feel better about my future with MS.
(*Side note- While I appreciate the stories, I'm not sure they make me feel better...)

I have an appointment with an MS neurologist on Friday to find out more about everything.

The Brain Blob

Matt and I have had a crazy week. Now that I can sit down with my computer I figured I'd document everything that has happened...

On December 19, I started having some numbness in my right foot and leg. Throughout the week my numbness moved up my leg and thigh. I went to the doctor, who told me I probably had a pinched nerve and should go home and stretch. It became a family joke, everyone making fun of my dead leg. As time passed, the numbness continued to climb the right side of my body, to the point where my face and top of my head felt tingly.

On January 3, I went back to the doctor (demanding that I NOT see the same doctor I did before) and she still didn't know what was going on. So she had me set up for some blood tests and an MRI. On Thursday night, after my MRI, the doctor called and told me that my vitamin levels were super low, which was probably causing the numbness. She set me up for B12 shots every day and a heavy dose of vitamin D.

On Friday, January 6, I got another call from the doctor. She told me that she had my MRI results and that there was a mass in the left parietal lobe of my brain that could be causing my numbness. She made arrangements for me to be seen by a neurosurgeon on Monday. No one really told us anything about what to expect or what to plan for, so we were pretty much blind all weekend.

On Monday we went in to see the neurosurgeon who told us the same thing: we don't know what the mass is and there is no way to know what it is without taking it out or taking a sample of it. So it was decided that the doctor would do a biopsy to find out what the "brain blob" is. Luckily, he had an appointment available on Tuesday, so we made arrangements to go in on Tuesday for surgery.

Tuesday we went in early for another MRI. The surgeon had to shave parts of my hair for the sensors, luckily he didn't seriously maim my head. I did have to wear the sensor stickers for the rest of the morning, which caused some children to point and stare... Finally I went into surgery. The surgeon took a sample of the mass by making an incision on my head and using a needle from there. I was surprised when I woke up because I couldn't swallow. My throat was killing me when I woke up and I was being moved into the ICU. I couldn't figure out why my throat hurt until they told me that they had to put in a breathing tube during surgery. I was also told that being in the ICU is standard after a brain biopsy. My surgeon came in and told me that things went well and that they were sending the sample out to pathology for more answers, but that he was pretty sure it was not an infection.



I spent the rest of the night in the ICU and got to go home on Wednesday afternoon with a lot of painkillers. I have 10 staples in my head that will come out next week. We should hear back about the mass next week as well. We are very blessed with so many people who are helping to take care of us and have been praying for us. Thank you everyone for everything you have done for us this week. We are lucky to be through this first stage of this process with so much help and love and support! We love you all!

New Year's Eve 2011

New Year's Eve usually consists of lunch with my girlfriends, but this year everyone was busy so I went out with Matt to go ice fishing! Let me rephrase... Matt and I dragged everyone up to Rockport to go sit on the ice while no one caught any fish. I slept in the tent most of the morning and we all froze our butts off! Poor Jenna has the worst timing, she always seems to get skunked when she goes fishing with the Fischers. After a couple hours of freezing, we went home to warm up and watch some football. Then we went out to dinner at Red Robin (where I left my camera and found it again a week later). We spent the rest of the night hanging out, watching sports and playing games. No one made it to midnight though! Lame! Oh well. Maybe we'll be better partiers in 2012.

More Christmas Celebrations!

Christmas day with my mom and sisters is very different than it is with the Fischers. Less noise for one thing. We went to my mom's house and had breakfast and opened presents and basically lounged around all morning. Then everyone left and Matt and I napped and watched basketball by ourselves before going to meet people at the movie, War Horse. After the movie, we returned home for traditional Decker card games. Matt used to be hesitant to play cards with us, but after three years he is getting the hang of things. This is the time of night where the crazy comes out. Enough said.



Good times...