Treatment

My Treatment

Since my diagnosis, many of you have asked me about my treatment.  The day I was diagnosed, my neurologist prescribed an oral treatment that I took daily called Aubagio.  MS is an autoimmune disorder where your body attacks your central nervous system, so most treatments are some sort of immunosuppressant.  Within a few days, hives started to pop up on the palms of my hands.  It's the same reaction I have when I take NSAIDs.  I thought I'd give it a few more days before I told my doctorm but the next day I got really dizzy, nauseated, headache, fatigue, etc.  I wasn't sure if it was the medication or my MS, so I called my neurologist.  She asked me to come in, and they decided to take me off of the Aubagio immediately.  It was a few more days before I started to feel better.  Thankfully I work with amazing people who once again rearranged their schedules to allow me to take more time off as I recovered from my poor reaction to the medication.

My neurologist has prescribed me a new medication that is administered as an infusion.  It took over a month to get everything in order, but I have my first dose scheduled in about a week.  The first time they'll give me half a dose, and I'll go in again two weeks later for second half.  If all goes well, I'll go in every six months for treatment.  Each infusion takes about 5 hours, so I'm bringing a good book and my knitting.  Some people feel fine by the next day.  Others are sick for a week after.  We'll just have to wait and see.  Either way, I'm glad I don't have to worry about taking a pill at the same time every day anymore.

There is currently no cure for MS, so this treatment is designed to slow the progression of the disease.  My neurologist is also hoping that it will help with some of my current symptoms.  I'll have new MRIs done in a year to see if there are any new lesions on my brain.  If I don't, we'll continue the current treatment.  If I do have new lesions, we'll try something else.  I know people will be asking me if the medication is working, but there's no way to tell from day to day.  MS is so unpredictable that it's really hard to tell how effective a medication is.  That being said, I'm so grateful that I have medication as an option!  I'm excited to start fighting back.

Now it's time to make fun of the brochure!  This one actually isn't too bad.  It has lots of helpful information presented in concise and helpful ways.  But all of these brochures try to make taking medication seem like so much more fun than it really is.  When my mom started her first medication, the brochure showed pictures of people having fun but replaced everyday objects with nerves.  For example, there was a picture flying a "nerve kite" and a couple playing tennis using nerves as rackets.  But by far the best picture was a family in the fall raking up dead leaves.  Except they replaced the leaves with nerves....  Seriously?!?  A giant pile of dead nerves??  We laughed so hard at the ad guys who thought that was a good idea!

Here's the cover of my brochure:

The best part is that they never reference the picnic again... not once in the entire brochure!  I do have to bring a lunch to my infusion appointment because I'll be there for so long, but I don't think that's what they meant.  Plus a bouncy house in February just seems like a bad idea.  It may be weird, but my family loves to laugh about these!  They're almost always comically absurd.

Have a great day!

Great Is His Faithfulness

I recently posted about my journey to being diagnosed with MS.  I have been blown away by God's faithfulness through this.  Here's what He's done.

• I'm back in Colorado!  Being near my parents and other important people in my life has been huge.  Plus my parents were able to bring my old MRIs to me, which helped a lot with my diagnosis.

• All of my health junk started just a month after my health insurance kicked in!

• Speaking of health insurance, when I moved back to CO, I had a job lined up with a store in Greeley.  I was told it would likely be full-time, but I found out just two weeks before I moved that it was only going to be part-time.  This caused me to look for a new job, and I found a great one.  Not only am I making more money than I would have, but right around the time I was diagnosed, I found out that the store I was originally working at in Greeley was closing.  I can't imagine dealing with everything AND finding out that my store was closing.

• I have amazing colleagues!  They've been there to cover for me last minute.  They've made me meals without me even asking.  And they've taken care of me in so many ways.  What an amazing team!

• I'm not in my psychologically/emotionally abusive marriage anymore.  I'm in a such a healthier place mentally, emotionally, and spiritually.  It's made dealing with this diagnosis so much easier.

• I joined Mary Kay when I moved back to CO mostly to meet new people in the area.  Most of my MK peeps are Christians and have been a great support.  I even found out that one of them has MS, and we go to the same neurologist!  She's been a great resource.

• I have amazing examples to follow.  My mom, her dad, and her sister all have MS.  Papa passed away when I was in 7th grade.  He is one of my heroes!  He taught me that nothing is bigger than God, that there's always room for laughter, and that joy is a choice.  My mom and her sister continue to show me what trusting God, and living in joy looks like.  They are also there when I have questions about my diagnosis.

• They caught it really early which makes for a much better prognosis.

• By the time my mom was diagnosed, the doctors think she'd had it for 10-15 years already, but for various reasons they hadn't been looking for it.  Thanks to my family history, the doctors had a better idea of what was going on when me.

• My dad is the king of research.  He loves spreadsheets, and sifting through information.  He and my mom have helped me sort through the massive amounts of information I've been given by doctor so I don't get overwhelmed.

I'm blessed in so many ways that I'm sure I'm missing some.  It's amazing to look back and see God's plan.  Things that originally upset me, like not having a full-time when I move, have turned out to be huge blessings.  God has always provided, and I know He will continue to do so.

Owning My Diagnosis

The week before Thanksgiving, I was diagnosed with multiple sclerosis.  I debated telling anyone as no one would know I was sick just to look at me.  I am not a victim, and I don't want anyone to look at me differently.  The more I thought and prayed about it, the more I realized that this is part of my story, and I'm working on owning that story.  Plus, the best way to let people know that they're not alone in their trials is to be open about our own.  So here's the story of my diagnosis and what you can do to support me.

At the end of September, I started having terrible headaches combined with a "sparkling” in the corner of my right eye. I thought it was an optical migraine, and I waited for it to pass.  This went on for about two and half weeks, and finally my symptoms came to a head. The headache was now a migraine, the sparkling was making me nauseous, l was lightheaded, and l was having trouble concentrating and finding words. As someone who is used to pushing through this kind of thing, especially when others are counting on me, I wasn't sure what to do. Thankfully one of my best friends is a doctor. She had seen me at the beginning of this when I want to her daughter’s baptism. When I told her that my symptoms were continuing and that I had these new ones, she told me to go to the ED and get an MRI right away. (Emergency department is the correct term for what we call the ER. I think she’d appreciate that I used the correct acronym. LOL) 

I went to the ED, and the doctor said that my symptoms, age, and sex made him suspect multiple sclerosis. At this point I should let you know that my mom, her sister, and their dad have MS. (I’m sure I’ll write a post about all of that some other time.) After my mom was diagnosed, I started to worry that I would get it too. Every little lapse in memory made me worry. So my GP ordered an MRI in December of 2003. It showed a small spot in my left temporal lobe that turned out to be a ”normal abnormality.” This MRI did two things. It eased my mind a lot, and it served as a baseline for comparison for the MRls I had this time. 

Back to present day and the ED. They did an MRI, and when I came out, the nurse said, ”That was fast.” The MRI tech said, ”She was great. I could do a thousand of her a day!” MRls don’t bother me. I actually tend to doze off. Anyway, the results came back quickly, and the doctor told me that I had a spot on left temporal lobe. I did not remember that this was the same area as my MRI from 14 years ago, but I knew it was a possibility. He said that it didn’t seem to be in an area where MS shows up, but ED doctors are not trained to diagnose something like that. He also said that he had talked to the hospital neurologist who said that the sparkling in just one eye could be a sign of MS attacking my optic nerve. So my next step was to meet with an ophthalmologist. 

Within a few days, I was meeting with Dr Apple.  They numbed my eyes and dialated my pupils.  I had never had that done before.  And. it. was... weird!  I think Dr Apple's assistant may have been a cute guy, but I couldn't see anything!  I tried to text my ride, but it was completely impossible.  I had to ask the receptionist to text for me.

Anyway, Dr Apple put some machine to my eye to look at my optic nerves.  He was able to tell me pretty quickly that nothing was wrong with either one. Then he pulled up my MRI (yay for doctors in the same medical facility!) and said that he wanted me to follow up with a neurologist.

About a week later I got a call from the neurologist saying that she wanted to see me that day.  Generally it's not a good sign when they want to see you that quickly.  After my last MRI, it took three months to get in and find out that there was nothing wrong.  I called my folks and Mom started to cry when I told her that they wanted to see me right away.  She and dad drove up to be at the appointment with me, but not before mom remembered that she had a copy of my MRI from 2003.

We got to Dr Miller's office and waited for about 45 minutes to actually get in.  I told Dr Miller that my headaches had reduced from 4-5 per week to just 2-3 per week.  She informed me that that was still too many.  I agreed!  The sparkling was still present, and I was nauseous occasionally, but mostly from the constant motion in my periphery.  Dr Miller looked over my old MRI film while her scribe pulled up my new ones.  I told her that my new MRI showed a spot on my left temporal lobe, and she said that that was a spot on my old MRI in the same area.  I began to relax. Then she looked over at the computer where my MRI was pulled up and said, "Oh.  That's not the same spot."

My heart sank and my hands went numb.  She said that the position of the spot (hugging the ventricle) made her suspect MS but the presence of just one spot is unusual for MULTIPLE sclerosis.  She decided that I needed to do more MRIs.  She ordered MRIs of my brain, neck, spine, and ocular orbits both with and without contrast.

So on Halloween I arrived for my epic MRI session.  I wore a witch hat, cozy socks, and yoga pants.

MRI Survival Kit

I had an IV placed and started in on 2.5 hours of MRIs.  I chose not to take any breaks.  My back was cramping towards the last half hour so I distracted myself by singing VeggieTales songs in my head.  When I got out of the tube, the tech told me she was super impressed with me.  "I don't know how you did that!" she said.  (I was starting to see a pattern.  Apparently I'm good at medical tests.)

The next day I went back to Dr Miller.  I had two major fears.  The first was finding out that I had MS.  The second was not finding out anything.  Somehow, both happened.  It turned out that the MRIs didn't show anything that the first one didn't which is really good, but it also meant that we still didn't know anything.  Dr Miller still suspected MS, but couldn't actually diagnose me.  I was pretty discouraged.  She said that the next step was to do a spinal tap.

So about a week later, I went in to have my spinal tap.  The nurses from my MRIs recognized me, and were really sweet.  The whole Imaging Center staff in Fort Collins, CO was amazing!  Anyway, I was pretty nervous.  Thankfully they were using fluoroscopy which is kind of like a real time x-ray.  I knew that meant a lower risk for complications.  I was on the table and the doctor numbed my back.  He started to place the needle and saw me cringe a little, so he numbed me some more.  He got the needle in my spine, but apparently it wasn't quite long enough, so it came out and another one went in.  I thought the hard part was over, but then he told his assistant to tilt the table.  The whole table tilted upward, and I got really lightheaded.  I was fighting to stay conscious as they took four tiles of spinal fluid out of me.  Thankfully it went very quickly and once I was horizontal again, I felt much better.

You have to stay for an hour after the procedure to make sure you're OK, so they wheeled me into the recovery room.  As I entered, the nurse said, "Wow.  That was fast!"  She told me again later that I was the fastest spinal tap she'd seen.  Put another "A" on the board for me on my medical exams!  LOL!  After the hour had past and I was feeling OK, my ride drove me home.  I spent the rest of the night and the next day as horizontal as possible trying to avoid the dreaded LP headache.  And I felt pretty good, other than being really tired.

I went back to work two days after my spinal tap.  Half way to work, my head felt like it was going to cave in.  I realized that work was not going to happen.  I made it to work, went straight to the backroom, laid down and cried.  My boss came in and sat with me as I called my doctor.  She told me that I needed to go the ED to get a blood patch, which is kind of like a reverse spinal tap.  My boss drove me to the hospital, and I got yet another IV.

The anesthesiologist came and talked me about the risks.  I was nervous about another needle in my spine, but I knew I needed to have this done.  I was numbed again, and she started to place the needle by feel.  Unfortunately, she kept hitting bone, so she had to pull out and use a new needle one space up.  Then they placed a second IV in my other arm because they need really clean blood to put in your spine.  I was getting really lightheaded again, but the nurse helping was amazing and let me lean on her.  They took blood out of my arm and put it in my spine.  She put in four vials before I felt anything.  And guess what.  The doctor told me how impressed she was with my patience.  Hehehe!

I rested in the hospital for a while and was released right as my boss was getting off work.  She came and got me and took me back to my car.  The anesthesiologist said I could drive myself home.  The headaches were so much better the next day, though my back hurt for weeks.

For those of you keeping score at home.

IVs: 5

Needles in my spine: 4

Vials of blood drawn: lost count

Compliments on my medical test prowess: 4 for 4 😂

My neurologist was booked through Thanksgiving, so she was just going to call me with my results, but I got a call telling me that she wanted me to come in right away.  I went in and Dr Miller told me that I had multiple sclerosis.  I was emotional, but Dr Miller was great.  She explained why/how the spinal tap had confirmed her diagnosis.  She also told me that it's her job to protect me.  She specializes in MS, and I feel really good about being in her care.  She told me that they caught the MS really early, and that she has good reason to believe that I have a mild form of it.  We won't actually know which of the four types I have until we've been able to watch it over time.

The news has hit me slowly.  It's hard to really process something this abstract, especially when the progression of this disease is so unpredictable.  Some people suffer near complete paralysis, memory loss, and early death.  Others lead long lives with few external symptoms.  Dr Miller started me on a medication to try to keep me in that latter group.  There is no cure for MS yet, but medication can slow it's progression.

I've started and stopped one treatment already, but this post has been long enough.  So I'll leave you with this.

How You Can Support Me

Love me as you always have.  Feel free to google info if you'd like, but please don't send me articles.  I have a ton of pamphlets from my doctor to get through, and there are an a huge number of variables that makes MS different for everyone.  I'm not in a place right now where I can navigate all of this information.  Feel free to ask me questions, but understand that I may not be up for talking about it at that moment.

Mostly, you can support me by not treating me any differently.  I'll try to be honest about my limits, and to ask for help when I need it.  Prayers and love are all I need.