Quill’s Myasthenia Gravis Journey, Part 2: Diagnosing a Seronegative Dog

As I write this, my two-year-old Labrador Retriever Quill is napping beside me. Pretty soon, he will interrupt me to play in the snow that fell last night, and I will gladly stop writing to let him race around like the young dog that he is. Few things make me happier these days than watching him run zoomies like an ordinary dog. 

On this day last year, Quill was not moving like a normal dog, and we did not have a clear answer. I wrote about the first part of Quill’s story in the post “Quill’s Megaesophagus: From Healthy Dog to Veterinary ICU.” In this blog, I will share his journey from ICU to being diagnosed with Myasthenia Gravis as a seronegative dog.

Quill’s Christmas Stay at the Veterinary ICU 

If you read the first part of Quill’s story, you read about the incidents leading up to visiting multiple emergency vets as saliva and fluids poured from his mouth and nostrils. You read about the abrupt way that I learned he had developed mega-esophagus and was sent home with vague instructions and a dog that was getting sicker as each hour ticked by. And, of course, you read that I ended up at two different emergency veterinarians on Christmas Eve before finding someone who could help save my dog. 

Leaving Quill at the second emergency veterinarian on Christmas Eve was absolute torture.

While the logical side of my brain knew that all of the Christmas gifts and decorations were a human thing,  the emotional side of my brain was overwhelmed by not having him with us for the holiday. 

I purchased his adult-sized harness, collar, and matching leash to celebrate his first Christmas as a big dog. I also found a metalsmith who made me a custom name tag shaped like the Guardians of the Galaxy emblem. He also had a new stocking with his name embroidered to match Tink’s and a new ornament with his name. 

During the gift exchange, I learned that our entire family had included him in their shopping. As a family member distributed gifts, a large pile with his name was set aside until he came home. With each gift added to the pile, I became more and more emotional about him being away from his family, who so clearly loved him. He had never spent a night away from home, and I worried that he was scared and confused on top of being so sick. 

When the emergency clinic called with an evening update, they told me that Quill was doing better in vomiting and breathing and that the steady stream of fluid coming out of his nose was better. He was still making odd movements with his head and neck. He had started showing weakness in his hind end, making them think Myasthenia Gravis was the culprit. I had already agreed to test for it, and I told them again to definitely do the test. 

“I will do whatever we need to do to get my boy to come home safe and sound,” I said. 

They replied, “That’s what we are working on doing for you.” 

Meaning: it is not a guarantee that he will make it home. 

An Unofficial Diagnosis of Myasthenia Gravis 

On December 26, one of the vets from the ER clinic called to tell me that based on all of Quill’s symptoms and history, they were very confident that he had Myasthenia Gravis. Every one of his symptoms was textbook Acquired Myasthenia Gravis for dogs, from the sudden onset to the regurgitation, the mega-esophagus, and the front and hind end weakness. 

Myasthenia Gravis for dogs is diagnosed with a blood test. According to the Cornell Richard P. Riney Canine Health Center, “MG is most commonly caused by an autoimmune disease that reduces muscles’ ability to process signals from the nervous system that normally tell them how to move and function. Motor neurons transmit this information by sending a chemical messenger called acetylcholine (ACh). However, MG destroys the receptors that muscles use for receiving and activating ACh, making it harder for the muscles to work properly.” 

The blood test for Myasthenia Gravis looks for antibodies to ACh receptors. Currently, only one laboratory in the United States performs the test, and results can take up to two weeks to receive. 

The veterinarian on duty told me that because Quill had so many symptoms aligned with the disease, they felt confident about starting him on a medicine called pyridostigmine bromide before getting the test results back. He also explained that the fastest way for us to get him started on the drug was for them to call it into our local Walgreens and for me to pick it up and take it to them. I agreed without any hesitation at all. The prescription was ready within an hour, and I was headed to the ER vet. 

Fortunately, the medicine did start to help within the first few doses, and Quill improved enough that on December 27, I went to pick up my boy. We left with a variety of medications, several cans of “prescription” low-residue wet food, and instructions to feed him upright. The vet techs had been feeding him small meatballs of canned food by hand while he stood with his paws on the counter, and he had not regurgitated since they started this process. We laughed that this was his dream come true, to be not only allowed but encouraged to counter-surf and be fed for it. 

Feeding Quill in his Bailey Chair 

I found a group called the Upright Canine Brigade on Facebook. I spent hours browsing files and websites their admins and members recommended. I shared his story and received many helpful comments and suggestions from other dog owners. So, while I was still utterly terrified about how to care for him, I also knew I was not alone.

We fed Quill his first meal with his paws on the kitchen counter just like they had done at the vet, but we quickly realized it was difficult to keep him standing up like that with his hind-end weakness. In the Upright Canine Brigade group, I read that most dogs needed 20 minutes of upright time for gravity to get the food down their esophagus into their stomach, which does not sound very long until you need your dog to stand in one place. 

We had been looking at websites that sold Bailey Chairs since Quill’s diagnosis as a mega-esophagus dog. A Bailey chair is a dog high-chair built especially for dogs with mega-esophagus. It keeps them upright and comfortable so that food and water slide down their esophagus from gravity since their esophageal muscles do not work. 

We had been holding off ordering a Bailey chair for Quill until we knew exactly what was happening. We had no idea if this would be life-long, if he would be one of the dogs whose condition was fixed by the Myasthenia Gravis medicine, or if he was done growing. A nice Bailey Chair costs around $500 for a large dog, so we were reluctant to get one that he might quickly outgrow or, even better, not need permanently.

Thankfully, my husband is mechanically inclined and has been studying different chair designs. After a quick trip for some plywood and hardware, he was able to build Quill a chair that same day. It was very simple, with just three sides and a door with a latch. We added old blankets for cushions and a travel neck pillow for him to sit on so that he would not injure his tail. 

Quill figured out quickly that getting into the chair meant food. If you are going to have a mega-esophagus dog, it helps to have one obsessed with eating like a Lab. The fact that we have always done a lot of obedience and physical training with him helped tremendously. 

I started by having Quill stand in front of the chair. Then, I scooted him backward using the word “back” and then asked him to sit. After he sat, I picked his paws up in the air so he sat like a squirrel and told him, “Paws up,” while I latched the door. Once he was loaded, I fed him his meatballs and a cup of crushed ice, and then we spent 20 minutes in that upright position. 

Keeping Quill Quiet and Calm in His Bailey Chair 

Keeping him sitting in the chair for 20 minutes after eating was not the easiest task. I sat on a kitchen chair in front of him to keep him from climbing out of the chair. We added a harness and a carabiner clip to the chair set up, which helped, but sometimes, he still managed to stand on his back legs, his paws draped over my shoulders. While this was adorable at first, especially since he loved to rest his chin on my shoulder,  it started to strain my neck and shoulders, so I learned to keep a firm grasp on his harness to keep him from standing. 

We did this feeding process 5 times a day. The only way he could take his medicine was with food, and in order to have food, he had to be in his chair. His medication schedule meant feedings at 6 am, 11 am, 2 pm, 6 pm, and 11 pm. 

We also learned to use the Bailey chair if he regurgitated or ate snow in the yard. Somehow, he seemed to know that he could not drink water and keep it down because he stopped drinking water entirely the entire time his esophagus was affected, getting all of his hydration from the wet food and ice chips. 

Terrifying Trips to the Veterinary Emergency Clinic 

In the first two weeks after Quill’s release from the veterinary ICU, we ended up at the same clinic’s emergency department several times. Getting his mega-esophagus regurgitation under control took a lot of medications and trial and error. 

On the second day home, things were going well until he tried to eat a piece of cardboard from a gift box. That piece of cardboard triggered a massive round of regurgitation we could not control. We ended up at the ER vet to make sure he had not aspirated again, only for the X-rays to show a small foreign object in his abdomen. This object reignited our fears that all of the vomiting had been caused by an obstruction. 

From there, we returned to our primary veterinarian, where we did a round of barium X-rays that showed no object, adding to the confusion even more. Throughout those first few weeks following his hospitalization, we would go back and forth between my regular veterinarian and the emergency clinic several times. 

We had a good handle on Quill’s regurgitation during the day, but everything seemed to spiral at night. As you would expect in January in northern Illinois, it was our coldest, snowiest part of the year, so many of our drives to the vet were on icy, snow-covered roads. 

Those drives to and from the emergency clinic with Quill were extra emotional because of losing Jax the way we did. If you have followed me for a long time or read my blog about losing my beloved Jackson, then you know that Jackson passed away on the way to a different emergency vet, where we were headed to help him pass over the Rainbow Bridge. We never made it, and he died in the backseat of my husband’s pickup truck.

Driving through dark, snow-covered roads, with Quill regurgitating and listless next to me while I tried to keep myself together to not upset him or cause him additional stress, is an experience I will never forget. Each time he fell asleep, I woke him. I was terrified that he would die. I was frustrated that the snowy roads meant I could not drive as fast as I wanted. I knew that if we slid off the road and got stuck, it would mean that I wouldn’t get him to the clinic, and I could lose another dog trying to get help. 

Quill’s Myasthenia Gravis Test Comes Back Negative 

When Quill’s Myasthenia Gravis test came back negative, we were all shocked. However, the vets told us this is common when dogs are tested so soon after developing symptoms. The emergency clinic that had done the testing contacted a canine neurologist who said she felt comfortable keeping him on the Pyrostigamine Bromide until we could perform a second test. 

Quill was still experiencing the strange tilting of his head that he had developed. I had still not experienced the rear-end weakness that they had seen when he was in the ICU, although this would soon change. 

With the diagnosis of Myasthenia Gravis now uncertain, I decided to take Quill to see a highly recommended canine chiropractor. Ever since the start of his health issues, we had wondered if he had injured himself during one of his rough-housing play sessions with Tinkerbell. The chiropractor agreed that something was definitely going on with his neck as she examined him and performed an adjustment. 

After that first adjustment, he never did the strange jerky head movement again, so now that we have an actual diagnosis of myasthenia gravis, I believe it was unrelated and that somewhere along the way, he injured himself. I will never know whether it was playing with Tinkerbell or if they mishandled him at the first emergency vet (the movements started after we left there). Thankfully, the chiropractor fixed that quickly and correctly. 

Unfortunately, right after Quill’s neck issue was resolved, he started having issues with his front and back legs, like they had seen in the emergency clinic. With his neck no longer bothering him, I started letting him have a little more freedom in going outside and exploring the yard. The temperatures also dropped below zero, which can trigger flare-ups of some autoimmune issues. 

Quill’s first collapse happened on the coldest night of the winter. We were walking through the yard on a potty break, and his entire body collapsed. It was below zero, and most of his abdomen was missing fur from a recent ultrasound. I struggled to pick him up, but his entire body was as if he had no bones. In subsequent vet visits, I would describe it as the boneless chicken ranch cartoon from the old Far Side cartoons. Thankfully, my husband was home, so I ran over to our window and pounded on it, and he came running out to pick him up and bring him inside. 

After that, I started taking Quill outside his harness. I also took detailed notes about his actions leading up to the collapse. Was it after pooping? Was it after trying to run? Was it after walking for a certain length of time? 

We ended up back at my regular veterinarian. Quill spent the entire day with them without exhibiting a single weakness. We also got the good news that his esophagus was back to normal and that I could feed him without the Bailey Chair. 

When I picked him up, though, he was so excited to see me that he collapsed right then and there in what looked like a seizure. This added another possible explanation for his health issues. 

Quill’s First Visit with a Veterinary Neurologist 

In early February, we finally got in to see a veterinary neurologist. I am a proponent of veterinary teaching hospitals, but we were able to get an appointment with a local neurologist more quickly, so we headed off to that appointment on yet another snowy day. In what I like to call FireWife Murphy’s Law, my husband was at work that day, and my windshield wiper on the passenger side chose to stop working halfway to the clinic that day. Thankfully, we made it safely to his appointment. 

By now, I was keeping an extremely detailed account of every bit of Quill’s journey. I had a Google Drive full of videos of him and a printout of every symptom he had had. I had prepared for this appointment with more attention to detail than some people prepare for a job interview. 

The neurologist listened to Quill’s story, looked at his test results, and did a nose-to-tail physical exam. She told me that he was in perfect neurological condition and that she strongly doubted that he had myasthenia gravis. She based this on his extremely low test numbers and his physical condition. She also explained that if a dog is on pyridostigmine bromide and does NOT have myasthenia gravis, it can bring on symptoms of myasthenia gravis. Her advice was to slowly taper him off of the medicine over the next week. 

As we tapered him off of his medicine, we continued his chiropractic appointments. The temperatures warmed up outside, and the birds and rabbits started appearing. Quill started showing fewer hind-end issues, so I let him have more freedom in the yard. 

One day, I let him outside without his harness, as he had been having a lot of good days. I had not seen the rabbit sitting just off my deck, and he took off at full speed, leaping across the three steps to the ground. When he landed, his front legs gave out, and he slid on his face and shoulder across the grass. He was up and walking by the time I got to him and seemed absolutely unfazed. 

In the next few weeks, we would have a few more episodes in which he would try to run to chase a bunny and face-plant as soon after just a few leaps. We were seeing some weakness in his rear end. We had not had regurgitation for several weeks, which was a relief. However, we still had no diagnosis, so my primary veterinarian sent in a second Myasthenia Gravis test. 

Finally Getting a Diagnosis for Acquired Myasthenia Gravis

When Quill’s second myasthenia gravis test came back negative, we were absolutely baffled. I decided to take him to see the neurology team at the University of Wisconsin Veterinary School. He was no longer taking the pyostigamine bromide and was not regurgitating anymore, but he still had moments where his back legs grew weak after just a bit of exercise and the front-end collapsed when he tried to run. 

I was convinced he had injured himself, so I headed to Wisconsin, expecting to need an MRI. After speaking to many veterinarians and doing so much research independently in the last two months, we were exhausted. Possible causes of his problems ranged from a pinched nerve to epilepsy to various neurological issues. 

There were some wins, though, like finally getting word from our pet insurance company that his claims would all be covered. Another barium test of his esophagus showed that he was now swallowing food and water without needing a Bailey chair. 

Like the previous neurology appointment at the other clinic, I shared Quill’s entire story. I provided them his printed history, the results of the first two Myasthenia GRavis tests, and access to the Google video folder. They took notes, asked questions, and then took him away for his exam. 

This time, the exam included an exercise test. It was a simple test in which they took him outside in a fenced area on his leash and ran with him until he showed symptoms of muscle weakness. Just as he had done at home chasing bunnies, he quickly started to stumble and tire. 

The veterinary team called me back to a private room and shared the results of their physical exam and exercise test. The neurologist provided a very clear and detailed explanation of her findings. She felt certain that Quill had developed acquired myasthenia gravis and asked for my permission to do a test in which they would inject Pyridostigmine and redo the physical exam. If he showed immediate relief, they would know he had myasthenia gravis. 

Quill’s response to the Pyridostigmine injection gave a clear-cut diagnosis. The veterinary team laughed at his before and after behavior. Before the injection, he ran along with them like a happy lab but tired quickly. After the injection, they said he leaped around, ran zoomies, and acted like a typical one-year-old Labrador retriever. I cried happy tears as they told me I had not seen that version of my dog for exactly two months. 

We left the clinic with instructions to start Quill back on the Pyridostigmine Bromide at the same dose he had been prescribed. They told me I would need to monitor him and do exercise tests throughout the day to ensure he was on the correct dose. It was essential to see how his body responded around an hour after a dose of medicine, halfway between doses, and right before the next dose. Too much medicine could cause symptoms, as could too little. 

Quill’s Myasthenia Gravis: One Year Later 

I am almost afraid to write this, but Quill is still running, eating, and acting like a regular young Labrador one year later. He is still on the same dose of Pyridostigmine Bromide. I don’t do official exercise tests, but I make sure I am constantly monitoring him. I try to play hard with him and get him to run and jump throughout the day to see how he is moving just after a dose and right before the next one. 

Quill is eating regular food again, although out of an abundance of caution, I give it to him with water to make it go down a little easier. I feed him from a slow-down bowl about 6 inches from the floor. I monitor him closely outside to ensure he is not eating contraband things in the yard. While his esophagus is working correctly, and mega-esophagus dogs regurgitate, not vomit, I still work hard to avoid him vomiting or irritating his esophagus. 

Our experiences with this disease have taught me some very valuable lessons, not just related to managing a dog with mega-esophagus or myasthenia gravis. And believe me, I learned a massive amount of information about that. But I learned that we will never have an uninsured dog ever again. I learned the importance of advocating for your dog and not stopping until you get answers. I learned to never feel guilty about loving someone with your whole heart. I will share these things in future articles here on this website, in between wearing out my once-again-wild child Quill. 

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