I was very excited to start my blog, until I realized that I would have to sit down and write this post. I’m not sure why it has been so hard for me. Perhaps it’s that putting it down in writing makes it seem very real, as if I’m not living it every day. Nevertheless, I feel it’s necessary to tell the story of the diagnosis. And then we will get onto much more fun topics, I promise. But today I attended the Mass and burial of my final remaining grandparent, so why not just add this to the salad bowl of emotions, right?!
The trouble began when I was approximately seven months pregnant with our second son. It was your routine healthy pregnancy and then one day in the OR I noticed I was having trouble holding the pick-ups in my left hand while suturing. Later that week I noticed difficulty using a clothespin to hang pants on a hanger. Same hand. Honestly, I gave it very little thought. I attributed it to swelling often associated with pregnancy.
I went on to deliver a healthy (but tiny) Henry Rowe Dennis on 9/7/16. Without complication. I did make note of my ‘easy startle reflex’ when I was in the hospital. A loud sound would cause me to seemingly jump out of my skin and I joked that both baby and I had the same reflex. Again, I thought nothing of it.
Time flew by with sweet baby Henry and his slowly adjusting big brother, Isaac. I’d make comments from time to time that my left hand was just darn clumsy. When Henry was six weeks old, we took off on a road family trip to Frankenmuth, Michigan. Our first trip as a four pack. Really a six pack because we brought the dogs. Because we are crazy. I will remember this day vividly for the rest of my days… I was standing outside of the hotel. I had Henry in my right arm and I could not get the key card out of my pocket with my left hand to get into the building. I was cold and felt somewhat panicked. This was the time I first thought “okay, this is weird and it’s not going away.”
October 2016 – 6 weeks postpartum – left upper extremity weakness
Shortly there after, Henry had a well baby visit with our pediatrician. She is not just your regular ‘ol average pediatrician. She is truly an amazing human who so kindly has taken a special interest in my health and family. She had some serious concerns about my hand and urged me to get in with a neurologist. However, the neurologist she recommended was unable to see me for six months. I thought “that’s crazy, this will be long gone by then there’s no need to make an appointment for six months.” I subsequently mentioned it to my boss, a brilliant orthopedic surgeon who also had similiar concerns. He scheduled me for a left upper extremity electromyelogram and nerve conduction velocity (EMG/NCV). I drove the whole way to my appointment thinking “this is so silly, they are not going to find anything and they’re going to think I’m crazy.” Well, I was wrong. The EMG/NCV showed I had a left brachial plexopathy. I was shocked. I had no idea I had that much damage. Dr Hupfer, my boss, then set me up to see a neurologist colleague. Neurologist #1, like me, was somewhat baffled by my onset and symptoms. Nothing fit a standard diagnosis. He ordered three MRIs. Brain, cervical spine and left brachial plexus, which were all normal. When he called to give me the results he said he felt it was some type of autoimmune/inflammatory reaction related to pregnancy and should resolve in six months. I elected to take off an additional month waiting for my hand to improve so I could return to the operating room, thus resuming my job full duty. In the meantime, I went to Physical Therapy. They gave me home exercises but told me not to overdo as they felt they could worsen my weakness. I began to notice increasing atrophy of the left hand which in hindsight should’ve been a huge red flag.
I returned to work January 4, 2017, to clinic only. I felt it was not yet safe to be in the OR. That morning as I was getting ready for work, I had my first fall. I happened to be in the shower, simply stepped backwards and lost my balance. I’m lucky I didn’t hit my head as I was home alone with the boys. I went to work that morning and noted my Dansko‘s, the shoes I have worn for ages, just didn’t fit well. I felt I was having to shuffle in order to keep them on, primarily my left foot. I would go on to fall a handful more times, doing seemingly routine tasks such as getting on the barstool at our kitchen island or putting the car seat in the car in a parking lot. I developed a limp of my left leg. We joked Neighbor could always find me in a store because of the way I clopped around.
I returned to see to see neurologist #1 and he ordered battery of additional tests. He repeated MRIs of my brain, cervical spine and thoracic spine. He ordered a full work up for MS including blood work, sensory testing and a lumbar puncture. All within normal limits. He still thought it was some form of inflammatory response. I returned to see our pediatrician for Henry’s six-month visit. She was increasingly alarmed by the profound atrophy of my left hand and made a few phone calls. She got me in to see the neurologist she had wanted me to see back in October. By now I was noticing slight handwriting changes… I am right-handed.
I saw neurologist #2 on April 7, 2017. Henry’s seven month birthday. The day that forever changed my life. Neurologist #2 performed a full neurological exam, asked me several questions and point-blank told me I have ALS. He went on to discuss the fact that there is no treatment, it is 100% fatal and patients typically live 2 to 3 years. I don’t remember much about that visit but I’m fairly certain I told him he was wrong and I quite possibly could’ve told him to go to hell. I was 36 years old at the time, I had a seven-month-old and a three-year-old. And he was crazy. It is not a disease for young women. It is it is a disease of old retired man. Not a young mom with a career, hopes and dreams and a full life ahead of her.
April 8, 2017 – The crap news didn’t keep us from going to Purdue’s Spring Fest. One of our favorite days of the year.
(April 8, 2017 – The crap news didn’t keep us from going to Purdue’s Spring Fest. One of our favorite days of the year.)
Neurologist #2 scheduled me for a repeat EMG/NCV but it would not take place for another month. Supposedly this appointment would be the end-all and give us answers because it was being performed by the “top“ neurologist in the Midwest. In the meantime, I returned to see neurologist #1 and he recommended a third MRI of my brain using a higher powered machine. He felt perhaps I could’ve had a stroke during pregnancy. I liked neurologist #1. A lot.
May 1, 2017 rolled around and I’m fairly certain I’ve never felt more nervous in my entire life. Neighbor and I went downtown to IU Neuroscience Center to undergo the test. Long story short, we gleaned zero additional information from that day. I received a phone call a week later on a Friday night from neurologist #2. He called to tell me that he still felt it was ALS, though I would have to have ‘chronic changes’ in three extremities for a true diagnosis. I might have on hung up on him, I don’t remember.
Easter 2017
He encouraged me to see one of his partners, an ALS specialist. What?!
We told no one for a while. Not even our parents. Not our friends. No one. I thought they were so completely wrong in their diagnosis and there was no need to alarm people unnecessarily.
I went to see the “ALS specialist” on May 31st. I went by myself because I was 100% convinced he was going to tell me good news. He was going to provide some other explanation. He didn’t. He again dove into life expectancy, future plans, clinical trials, etc. He did agree to do a trial of IVIG (14 infusions), for treatment of a possible diagnosis, Multiple Motor Neuropathy. He said it was a longshot, but worth a try due to my age. (I completed all 14 treatments in September 2017 without improvement of my weakness.)
By now I had returned to see neurologist #1 after another normal brain MRI. I brought up the potential ALS diagnosis and he felt it just did not fit. I could’ve kissed him.
After much insistence from our friends and family, I finally agreed to go to Mayo Clinic to hopefully get some answers. Neighbor and I flew to Rochester, Minnesota the first week of August 2017. Again, I was so incredibly hopeful and optimistic they would provide an alternative answer.
While there, I underwent a battery of additional testing including a third EMG/NCV. At Mayo, you have a lot of “downtime” between appointments and testing. So Neighbor and I decided to check something off my bucket list and we made the short drive to the Mall of America in Minneapolis. It was a fun distraction.
Despite the myriad of additional testing, unfortunately they were unable to come up with an alternative diagnosis. I was officially diagnosed with ALS – Amyotrophic Lateral Sclerosis. I am not sure why I was so shocked. I just felt in my heart it had to be something different. The optimist in me still does…
Turd Sandwich with a side of Glitter 