Friday, May 4, 2012

MS 4: My Long Awaited Neurologist Appointment & Diagnosis

The 12 days leading up to my neurologist appointment were really hard. I was under a lot of stress and I was scared. I just couldn't sleep at night because I had too many thoughts. So I would get out of bed and soothe them with a bowl of ice cream- such a bad two weeks to be an emotional eater!!

My appointment was scheduled for the nurse practitioner with the neurologist being available to step in at the end of the appointment. I wondered if the nurse practitioner would be able to help me or if I would have to schedule a follow up appointment to have more time with the neurologist.

I wondered if my neurologist would think I was "crazy" and then I would have to be referred to a neuropsychiatrist. 

I spent a lot of time wondering if this new neurologist would think I was crazy for wanting another baby.

I wondered if he would tell me I couldn't have a baby because I needed to be on medication.

I worried about why I wanted to have another baby when there were so many days that I felt guilty because I couldn't be there for my boys 100% of the time. There were a lot of days that I relied on help from others- my parents, neighbors, and friends to help take care of my boys and my house.

I felt guilty that my boys were stuck inside of the house when I couldn't move or walk. I felt like it was my fault when Hunter randomly stops what he is doing and says, "Sorry, Mom. I can't do that because my legs don't work."

I wondered about my future and my boys future and if I could give them a fulfilling childhood or if they would be lacking because their mom had problems.

I wondered if my husband, parents, friends, and neighbors would just get tired of trying to help me and if I would be a burden to them.

I wondered what I would do if they just couldn't find anything wrong at all.

I am pretty sure I gained 10 lbs from all the stress and ice cream. I just didn't know how to deal with it all. Those thoughts and fears were just too much. I knew it wasn't smart to stay up late by myself to think about those things. I know I would have just felt better to have gone to sleep and woke up with a new start the next day. I know people are probably wondering where my faith is.

But fear is real. Depression is real. Anxiety is real. Sometimes, it feels like you just can't escape it.

When I woke up the morning of my neurology appointment, a bunch of snow showed up on the ground. I was already anxious about the appointment and didn't want to have to deal with the snow too. I packed my boys in the car and drove them to my in law's house so they could be babysat. It was early and the snow had not yet been plowed.  Everyone was driving slow and I was getting nervous about being late. I dropped the boys off and then went to pick up my mom so she could go to the appointment with me. She is the best person to bring to my appointments. She has seen all of my symptoms and issues since I was a teenager and knows my medical history like the back of her hand. It is all still new to my husband, so I take my mom instead. I made my mom drive my car. I had so much anxiety over this appointment that my hands were shaking and I didn't feel comfortable driving in the snow. My mom took over for me and she told me to relax.

When we made it to the Dr.'s office, I checked in and prepared myself for the long wait. I was surprised that I only had to wait a few minutes before I got called back. Things were looking good so far. When the nurse practitioner came in, I was glad to see it was a woman. She was kind and careful and was a great listener. We went over my medical history, which took a good 2 hours, and then she did an exam. My favorite things from my time with her were:

1) When I told her how I felt about having more children and how I was worried about it, she said, "Of course who want more children. We will help make that happen."  Her answer was like taking a burden off of my shoulders. Finally, someone who understood. As a woman and a mother of 5, she understood my feelings, where as all the other male doctors I talked to just didn't get it. I asked her about the medical testing on medicines that would help me and what would happen if I had a "surprise" pregnancy while taking the meds. She talked about how dangerous it could be and it just further solidified my choice to not take any medicine that could be a risk until I was ready to be done having children.

2) I asked her about neuropsychiatrists and what they do. After she told me a little bit about them, I decided to ask her point blank if she thought I was crazy. She said, "Absolutely not. No one would make this up and then cause themselves to have a panic attack. That is not how the body works. This is REAL." Those words were so comforting to me.

Afterwards, she went and consulted with the neurologist and then they both came back into the office. He wanted me to have a CT scan to check for a tumor in my pelvis, an EEG to see if I was having mini seizures, a nerve conduction study in my arms and then another in my legs, and then more blood work.

The next week was spring break for the school district and I didn't have to babysit because my friend had it off. I asked if we could schedule all the tests in one week so I could do it without having to worry about the baby. The receptionist was able to make all of my appointments when I needed them and I left the Dr.'s office feeling positive and optimistic, with a much lighter burden on my shoulders. That is rare for me and Dr. appointments. I felt that even though it took months to get in and I was frustrated being switched from Dr. to Dr., Heavenly Father knew which one was the right for me to see.

The CT scan was only 10 minutes long. I had to drink 2 bottles of "contrast" that tasted disgusting. They also put more contrast in my IV and it makes you feel like you are burning and also like you are urinating all over. Such a weird feeling!

The EEG was interesting. I could only sleep from the hours of midnight to 4am, so that I would be sleep deprived enough to be able to sleep during a little segment of the test. They stick about 40 little electrodes all over your scalp with some goop. The lady placing all of the electrodes commented that people with long and dark hair are the hardest to get the electrodes placed. I did the test, which involved hyperventilating, closing my eyes and having a strobe light flicker like crazy, and then had to sleep for the last portion. The worst part was trying to get all of the electrodes out of my hair. Afterwards, I had to run home to shower so I didn't look like a nasty goopy haired person for my nerve conduction study that was scheduled a couple hours after the EEG.

I headed back to my neurologists office so he could perform the nerve studies and Chuck met me there. As I mentioned before, the only way I can describe a nerve conduction study is like being tased over and over again so they can check on the health of your nerves. Then they stick you with needles and test you some more.  I found the test really annoying, but it was a good chance to talk to my neurologist about everything. Between ever tase/shock and every needle stick, we would talk about my symptoms, my family, the funny things my boys did, my hobbies, my husbands job, our insurance, the economy, etc. The test took a while and my neurologist was kind. Every time he would shock me, and you see my whole body spasm and I would just laugh to mask the pain and embarrassment, he would put his hand on me and just say, "I'm sorry."

He told me that the CT Scan and EEG had come back normal and that the nerve study on my arms was looking normal as well. He told me he had an idea of what was going on with me, but would talk to me more about it the next day when I came back for the nerve study on my legs.  He ended the appointment by telling me that I was "legit." That this was absolutely real. That I was "normal" and not making it up. He told me the hardest thing he has to do is figure out if someone's symptoms are real or psychological and he said he sees a lot of people with both problems. He said, "I have gotten to know you and learn about you. You are positive and happy. You get frustrated, but you are legit."

I came back the next day, with my husband and my mom, to do my last nerve study and to learn my diagnosis. We had a good visit and the nerves in my legs were healthy. When he finished the test he said he was sure about what was going on with but he needed to check on the results of my blood work.

As he was looking at the results on the computer and said, "Hmmm, this is interesting."

All I could say was, "What? Is it normal? Like everything else?"

And he said, "No."

My blood work supported his theory that I have an autoimmune disease. The blood work didn't prove which disease I had, but it proved that I had antibody's that were attacking my central nervous system causing these problems.  My Dr. knew exactly what autoimmune disease he was going to classify me with. He drew out a spectrum on paper to explain what he believed about me.  This is what he drew:

 In med school, my neurologist studied under a doctor who was an MS guru. He felt my symptoms were enough to classify me on the spectrum of Multiple Sclerosis. My medical history documents all of my good and bad cycles or my "attacks" and they are consistent over the years and progressively getting worse. I don't think he thought lightly about placing me on the MS spectrum. After a lot of reading, I know there are many neurologist that won't even say "MS" to a patient unless they have the lesions on their brain and their spinal tap is positive.

My Dr. told me to be grateful that all my tests are normal so far, because it provides me with a healthy body to try to fight the autoimmune disease attacks, but that he also knew it was hard to deal with these "duck bites" that immobilize me. I will never be in full control of my limbs at any given time throughout my life.  Luckily, because I don't have the lesions on my brain right this moment, I am not currently at risk of paralysis and other life threatening symptoms that people with MS struggle with.

However, there is no way to say that I will stay on this place on the spectrum forever. MS is a progressive disease for most people. I cannot say that I have a 100% chance of never getting lesions. That is something only time will tell and I am still really young.

My doctor knew I didn't want to take any medication, so he asked if I would try a natural supplement that would be safe for me to take with pregnancy. It is called SAM-e and is actually used to improve "mood," but testing has shown that it helps strengthen the myelin sheath around the nerve to help fight the antibodys that try to attack your nervous system. He kindly said that even though he felt I wasn't fully depressed, he knew I had anxiety and got frustrated over my symptoms and felt this supplement would also benefit me in that area. He told me it would take 3 months before it fully worked. I am giving it a try. So far, it makes me tired and it upsets my stomach.

I left my appointment feeling so much "lighter" than I had in a long time. The three things I wanted (to have a name for what I had, to know whether or not I was crazy, and to see if having another baby was a possibility) were answered.

I thought back to the prayer I had so desperately said in October, asking my Heavenly Father if something was wrong with me. I knew there was something wrong and I felt that MS was definitely a possibility. As I thought about the appointment that I had just had and the diagnosis I was given, I felt that the answers to my prayer in the car that frustrating night were to prepare me for this day and this diagnosis. It prepared me to not second guess what my Dr. was telling me. It prepared me to trust him. It allowed me to listen to what he was telling me and to have peace inside confirming that it was ok to believe him and to not have fear in his diagnosis. Heavenly Father's love for me and watch care over me led me to a Dr. that I finally trusted and knew would help me.

I am so thankful for answered prayers.


Brie said...

I'm so glad that your prayer was answered and that you were sent to that doctor. I agree that he was an answer to your prayers. Thank you for sharing your struggles. I cried and cheered you on as I read each post. You are an amazing women. And your strength and faith inspires me. Please continue to share your story and life with us. Good luck on your adventure of another child. You're kids are so lucky to have you. While you may need help at times, you can teach them things no on else ever could!

Katie said...

Thank you for posting all this. It strengthens my testimony and allows me (and others) to pray for you. You are full of strength and are such a blessing to your family.
I hope you don't mind if I recommend a book to you. It is called "The China Study." It talks quite a bit about autoimmune disorders and MS and what the scientific community has learned about them in relation to diet. I know that you must be being pelted with information right now, and I don't want to assume to have any answers. I just have recently read this, was quite impressed with it, and have thought several times lately that you might want to read it.
You are in my prayers!

Katie Lewis said...

Hey Stacie,

I've been reading all of your posts about MS as you started writing them and now that you haven't written in a while I keep wondering how you're doing. I hope you'll keep writing.

Love you friend,
Katie :)