Navigating the MUE Website: A Beacon of Hope for Pet Parents

For pet parents whose beloved furry family members have been diagnosed with meningoencephalitis of unknown etiology (MUE) or one of its various forms like granulomatous meningoencephalomyelitis (GME), finding reliable information and support can be a challenging journey.

I will never forget sitting in the small room at the veterinary hospital and being told my beloved dog, Piper was suspected of having GME. 

Immediately after the neurologist stepped out, I reached for my phone and typed in "GME dog".

The Google search results were overwhelming and there was very little hope of survival.

The studies were so complex I remember thinking I'd have to go back and read it when I could focus because I had to have my science brain turned "on" to comprehend it.

Most importantly, it lacked clear guidance on treatment, prognosis, side effects (and how to manage them).

it also didn't make VERY clear how important speed was from suspected disease to treatment. 

In other words, there was very little practical application for us to help Piper through this devastating disease.

In that moment, I felt a resolute determination that we would not give up.

Piper, at the tender age of 9, had so much life left to live, and we were prepared to walk this path with her, every step of the way.

Piper lived in remission for six remarkable years after being diagnosed with GME in 2017, passing away on March 28, 2023 after a GME relapse that was resistant to treatment took her very suddenly.

We are forever grateful for the six years Piper was in remission and thankful for the friendship we have developed with the canine neurologist who literally saved her life. We have felt a strong need to honor Piper and her legacy, realizing that we were in a unique position to help pet parents who are facing this disease by providing a resource - a beacon of hope and knowledge.

4-Legger has created the MUE Research Center, a website that demystifies MUE, explores its types, and sheds light on prognosis, treatment, side effects (and how to manage them), and other information.

Understanding MUE

Meningoencephalitis of unknown etiology (MUE) is a category of fast-progressing neurological diseases where the body's immune system mistakenly attacks the brain, spinal cord, and their coverings, known as meninges. This was the type Piper had and is much worse than the other type which has a bacterial-mediated source which can improve the prognosis by simply by increasing the chance of isolating the bacterial cause and treating it in a targeted method.

The autoimmune-mediated response leads to inflammation in the nervous system, causing a range of neurological symptoms depending on the location and severity of the inflammation. In Piper’s case, she had massive inflammation in every lobe of her brain revealed through MRI and her symptoms reflected the severity of the d in her loss of functional ability. 

Types of MUE

MUE encompasses various subtypes, each with its distinct characteristics:

1. Granulomatous Meningoencephalomyelitis (GME): This form of MUE involves the formation of small clumps of immune cells called granulomas, leading to inflammation and damage to nervous system tissues.

   The disease involves inflammation of the brain, spinal cord, and surrounding tissues, leading to a range of neurological symptoms such as depression, pain, seizures, paralysis, and behavioral changes.

2. Necrotizing Meningoencephalitis (NME): Often referred to as "pug dog encephalitis," NME predominantly affects toy breeds like Maltese, Pekingese, and Chihuahuas. The inflammation caused by NME leads to the death of brain tissue, resulting in symptoms primarily affecting the cerebrum. Seizures and neck pain are frequently observed. Unfortunately, the prognosis for NME is less favorable compared to other MUE diseases.

3. Necrotizing Leukocencephalitis (NLE): Similar to NME, NLE affects the brain's cerebrum and brainstem. Yorkshire terriers and French bulldogs are predisposed to NLE.  Dogs with NLE typically exhibit varied symptoms, making diagnosis and treatment challenging.

4. Steroid-Responsive Meningitis-Arteritis (SRMA): SRMA is typically seen in young medium to large breed dogs, including Boxers, Beagles, and Bernese Mountain dogs. Clinical signs of SRMA often include severe neck pain, fever, and neurological symptoms. Concurrent nonerosive immune-mediated polyarthritis (IMPA) is also commonly reported in SRMA patients.

 

Who Can Get MUE?

While MUE can affect dogs and cats of any breed or age, it predominantly presents in a specific profile:

• Small dog breeds, such as toy breeds, terriers, and poodles.
• Young to middle-aged dogs, with an average age of around 5 years.

There is still very little data on cats who are diagnosed with MUE, but it is possible.

Though these diseases are considered idiopathic, meaning their exact cause is unknown, recent studies on similar diseases offer valuable insights.

For example, in the case of NME, a genetic marker has been identified, increasing the risk for dogs with specific DNA mutations.

Environmental triggers like vaccinations, infections, or chronic inflammation may activate the disease in genetically susceptible pets, leading to the immune system mistakenly attacking the nervous system.

Symptoms of MUE and GME

Piper's symptoms started out with her being withdrawn and not wanting to play. 

From there, they progressed to "carpet hopping" in the house where she didn't want to walk on the hardwood floors and would hop from carpet to carpet. 

Then, she quit coming up the stairs and started over-jumping door thresholds. 

After multiple mis-diagnoses and treatments (luxating patellas and urinary tract infection), it wasn't until Piper started having grand mal seizures that it became clear there was something neurological at the root of everything. 

Treatment and Hope

While there is currently no cure for MUE, timely diagnosis and aggressive treatment can extend your pet's life and regain their quality of life.

The speed from suspected disease to treatment is incredibly important.

Like Piper, many are mis-diagnosed delaying treatment which may result in permanent damage (such as vision or brain damage).

We hope to change that.

We want all pet parents who have a possible diagnosis of MUE, GME, or one of the other types of this disease to be armed with information to make good decisions in a timely manner. 

Piper's Triumph Over Adversity

Piper's story is one that resonates with anyone who has experienced the challenges of navigating a chronic illness.

Diagnosed with GME at age 9, Piper exhibited incredible strength and courage in the face of adversity.

Piper's journey was a testament to the power of medical intervention, unwavering love from her family, and her own determination to fight against the odds.

The MUE Resource Center

In honor of Piper's journey, the MUE Resource Center was born.

This comprehensive website aims to provide a wealth of information about MUE and GME to help pet parents navigate this disease. We have included Piper’s neurologist to act as a medical advisor and reviewer of information found in the MUE Resource Center.  We have never met a more knowledgeable, caring and dedicated veterinarian and are so thankful for the friendship we’ve created through Piper’s journey.

The resource center offers the following:

1. Clear Understanding of the Disease: We've broken down in simple terms what MUE and GME are so you don't need a PhD to understand what is happening in your dog's body. 

2. Diagnosing MUE: We review how MUE and GME are diagnosed and what tests are needed.
3. Quality of Life and Longevity: MUE affects not only the physical health of the pet but also their overall quality of life. The MUE Resource Center Website guides pet parents in understanding the potential challenges their pets might face and offers strategies to enhance their well-being. Additionally, the platform discusses the factors that contribute to longevity, empowering families to plan for the future.

4. Treatment Insights: MUE must be treated quickly and aggressively. We've identified the current treatments, their side effects, and reviewed Piper's experience. We don't want pet parents to be afraid of aggressive treatment plans that offer the best possibility of survival.

5. Financial Considerations: The costs associated with MUE diagnosis and treatment can be a significant concern for pet parents. The website provides insights into the financial aspects of caring for a pet with MUE, helping families better anticipate and manage the expenses involved.

6. Supportive Community: We've identified the social media groups where you can ask questions and hear from pet parents who have supported a MUE or GME warrior. 

7. Research Updates: Keeping up with the latest research on MUE can be overwhelming. The resource center acts as a hub for updates on ongoing studies with a list of scientific articles you can reference to learn more.

8. Tips for Caregivers: We provide practical advice for caregivers, ranging from managing medications to enhancing the quality of life for your MUE / GME warrior. We also have a medication tracking sheet template you can download and use.

A Legacy of Love and Learning

The MUE Resource Center serves as a lasting tribute to Piper's strength and resilience.

Piper's journey from diagnosis to remission, while not without its challenges, stands as a beacon of hope for anyone facing the trials of chronic illness.

In a world where information is invaluable, the MUE Resource Center Website shines as a beacon of hope and knowledge, illuminating the path for pet parents and their MUE warriors.

As we navigate the

complexities of rare diseases like MUE, we're reminded that even in the face of adversity, love, compassion, and information can empower us to create a brighter future for our beloved 4-legged family members.