Sticky Note with MS Society Website

Neurologist & Tests & Treatment

The Two Week Wait

Imagine walking out the door of a doctor’s office with one link to a website on a sticky note and being told you were diagnosed with a disease that you knew nothing about, except that the few people you know that have it aren’t doing so well. It is life changing. Trying to imagine what the future holds, what will have to change, and what dreams might be crushed.

I was told that I would need to wait to hear from the neurologist and then they would set up an appointment. I am not the type of person to just sit and “wait” around for a call, so I called the neurologist first thing Monday morning. They had not yet received any information from the previous neurologist and were starting to sound like they were going to wait for the information. I burst out in tears to the poor receptionist, bless her heart that she was so kind and understanding, and thankfully she decided to get me on the calendar as early as possible, but due to our trip and the fact that they still needed the MRI results from the other hospital, I wasn’t able to get in until the 3rd.

So, I went on my 30th birthday trip, waiting, researching, praying, and crying every now and then. I am so thankful that we planned that trip because relaxing on vacation was much better than stressing out and waiting around for the appointment at home.

First Neurologist Appointment

I was anxious to go see the neurologist and hear what he would have to say about my diagnosis. Imagine walking into a doctor’s office and everyone walking in has canes, walkers, and wheelchairs. To be fair, most of the people were in their 80s, but one gal that was probably in her 40s was using a cane. Flyers on the wall saying, “which walking assistant is right for you” were glaring at Mitchell and me as we waited. There were also some flyers about marijuana assistance for MS, so at least there might be a little bit of fun with the disease.

The neurologist was incredibly nice and thorough. I have never spent an hour and a half with the doctor answering questions, walking me through information, and treatment options as thoroughly as this neurologist did for me. Maybe this is normal for neurologists, but other doctors I have had to ask questions as they are running out the door to their next patient.

I had to do several tests to measure objective signs of MS. My neurologist tested my coordination and strength, nerve sensation, eye movements, reflexes, and senses. I passed my tests with flying colors (hopefully it can stay this way for a long time).

Diagnosis Complications

My neurologist had confirmed based on my MRI scans that I had two very small and very common lesions that resemble MS. He without a doubt said that this is early MS. Within the last two years there is a new criteria, called the Mcdonald Criteria, diagnosing MS early so that treatment can be started earlier and help stop permanent damage.

However, because so many diseases mimic MS, my neurologist still wanted to run blood tests and double-check that there wasn’t something else happening. He figured this would be no problem to do while we were waiting for insurance and the specialty pharmacy to get my treatment plan set up.

I did get one positive blood test for ANA with IFA meaning that my blood tested positive for a autoimmune disease. The confusing thing explained to me with this test is that it usually isn’t positive for MS (more common for Lupus), however it can also be positive for people who don’t have autoimmune diseases. Are you tracking? We were confused and not sure why the test is even considered important. Since this turned out positive, my neurologist ran a whole new set of blood tests for other autoimmune diseases and those all came back negative. Along with the other set of blood tests it was recommended to do a spinal tap. Fun.

Spinal Tap

The Thursday before Easter I set-up my spinal tap. I was told that this would be similar to the spinal block I received giving birth to Luke and that besides laying down flat the rest of the day it shouldn’t be too bad. I was warned that spinal headaches happen, but they are only supposed to happen to about 20% of people. The rest of the day Thursday I was laying flat and felt fine. I woke up on Friday and felt fine until about 10 AM. It hit me, the worst headache I have ever experienced in my life (I don’t get migraines so I don’t have anything to compare it to, but Mitchell said it sounded similar). You aren’t bothered by light or loud music, you are bothered by your head being upright. If you get a spinal headache it means that spinal fluid is still leaking and your brain is not surrounded by the right amount of fluid so your brain feels like it is being pulled on. If you lay down, it magically goes away. The rest of the day Friday I took it easy and laid flat, drank caffeine (apparently this is supposed to help) and hoped I would wake up feeling better on Saturday. I woke up on Saturday and a similar thing happened where it took a few hours to hit, but once it hit it is excruciating. I made it to about dinner time before I decided I couldn’t handle it any longer and I needed to get a blood patch. The biggest issue with a spinal headache is that it can last 7-10 days. Who has time to take a week “off” and lay flat all the time? I don’t. Plus, I could hardly sit up long enough to eat food. I drove myself to the ER because I knew Luke needed to go down for the night before too long and I didn’t think it would be that big of a deal to call anyone to come be with me. I didn’t quite know what a blood patch was until I got there. They go back into your spine and take your own blood and insert it into your back. I personally found this to be more painful than the spinal tap. They made me stay at the ER laying flat for two hours. When I woke up the next morning and started moving around for the day, I felt much better. Well, my back and body were weak, but no headache! Whew. It was worth it.

I did get a lot of crap from my family that I didn’t call anyone to come with me to the ER. I guess it is funny that I drove myself to the ER, but at the time it just didn’t seem like that big of a deal. Ha. Oops.

The spinal tap came back completely clear. There were no signs of MS or any other health conditions. However, spinal fluid can come back clear from the disease in approximately 5-10% of people with MS.

So, this doesn’t rule MS out for me. Why did I go through the spinal tap again?

Easter Sunday – No Spinal Headache – HE IS RISEN

Starting Treatment

After running all of those tests and getting negative results it almost felt like we were back where we started. Still going off the diagnosis of the MRI results. Two neurologists still confident that this is MS so we are going to move forward with treatment.

Relapsing Remitting MS has about 15 different treatment options (and they are working on new treatments all the time). MS does not have a cure, but there are different treatment options to help slow the progression of the disease and help stop relapses from happening.

I am starting on one of the oldest treatments available, Copaxone. It is considered the safest and even though it is one of the older treatments, it is thought to be very effective. I have to do self-injections three times a week. So far, it isn’t too bad. Here is to hoping that the injections will get easier and my body will respond well to the treatment.

Thank you for your prayers for my health!

I can do all things through Christ who strengthens me.

Philippians 4:13