Amber Walker, PT, DPT

 

Hi! I’m Amber, and I’m from Anchorage, Alaska. I’m a proud auntie, outdoor enthusiast, healthcare provider, and freelance writer/photographer. In the past I’ve held roles as a collegiate athlete, swimming coach, affiliate faculty for graduate students, researcher, story gatherer, small business owner, and public health leader. My happy place is on a mountain trail or a paddleboard.  I have a high affinity for global health projects and exploring new cultures!

In 2016, my career as a physical therapist was put on hold as I hit rock bottom with the silent and invisible symptoms of MCAS. My health had been deteriorating gradually since I spent a year in Peru as a volunteer with Catholic Medical Missions Board in 2010-2011. But to be honest, certain aspects had not been well since my teenage years, and I had floated from specialist to specialist for nearly two decades. And looking back, I had signs of MCAS in my history since birth. Leading up to the spring of 2016 I was still searching for answers, working multiple jobs and training for trail ultra-marathons. I just kept “pushing through” symptoms until I could no longer function.

I had all the labels – chronic fatigue syndrome, fibromyalgia, anxiety/depression, psychosomatism. I had bounced around from misdiagnoses of M.S., rheumatoid arthritis and Crohn’s disease and had even undergone one unnecessary surgery for endometriosis/interstitial cystitis. I regularly experienced hives, fevers/flushing, insomnia, dysautonomia, upper cervical instability issues, dizziness, headaches, blurred vision and eye floaters, hair loss, Raynaud’s circulatory issues, severe gastrointestinal symptoms including gastroparesis and abdominal angioedema, intestinal cramping, nausea and vomiting, urinary urgency and frequency, burning in the mouth and throat, heartburn, blood pressure drops and near fainting, dermatographism, chest pain, sinusitis, difficulty breathing/”asthma”, recurrent pneumonia, ruptured eardrum, vocal cord issues, facial nerve issues, numbness and tingling and burning in the hands and feet, a “chemical-like” anxiety, severe mood swings, hypoglycemia, intracranial pressure issues with cerebrospinal fluid leaks, eye irritation, muscle and tendon inflammatory issues, joint pain, frequent fractures, spine pain and sciatic nerve issues, abnormal bruising, skin abnormalities, chemical sensitivities, cold intolerance, and severe anaphylaxis to insect stings and many foods.

In late 2016 I relocated from Alaska to Washington and continued to pursue health answers. Once in Washington, I began having more severe and frequent reactions to my environment and foods, and determined that black mold-infested buildings were partly to blame. I was having anaphylaxis from sitting on a bus, walking by a cigarette smoker or someone with perfume, eating the same thing I had yesterday, and driving through farm country. I moved several times in attempts to reduce mold exposure. I stumbled upon Dr. Afrin’s book, found a functional medicine doctor who was willing to test me for MCAS (even though she had never heard of it) and the rest was history!

Monoclonal MCAS is a big part of my health puzzle, and getting certain symptoms calmed down has made a big difference in my quality of life, but I still continue to strive for a more holistic approach. While MCAS undoubtedly has connections with genetics, I firmly believe that the environment of toxins – in air, water, food, heavy metals, hidden mold, etc. – is a big contributor. I also believe that underlying issues such as viruses and bacteria can contribute to the bigger picture of immune dysregulation and mast cell activation.

As I continued to investigate, it became clear that other factors like Epstein-Barr virus, Lyme disease and co-infections, mycoplasma pneumonia, streptococcus pneumonia, toxoplasmosis, c. diff, SIBO, parasites and protozoal infections, heavy metal toxicity, celiac disease, mold toxicity, adrenal fatigue, POTS, post-traumatic stress, liver and detoxification problems, Ehlers-Danlos syndrome, median arcuate ligament compression, hereditary angioedema and thyroid issues were all part of the puzzle and potentially connected to my mast cells going awry. With such a high load and burden on the immune system, I was not able to make progress until I addressed some of these other factors.  And a big aspect of my healing journey resides in my faith, surrender of control to God, and continual focus on deep-rooted joy vs. fleeting happiness.

As I’ve uncovered many truths about the disease and its triggers, I’ve been compelled to share them with fellow patients and my peers in the physical therapy world. Looking back, I now realize that many of my prior patients were likely suffering along the spectrum of mast cell activation disease. I want patients to be empowered to get at the root issues contributing to their chronic musculoskeletal and neurological ailments. Physical therapists (PT’s) have a unique vantage point and the opportunity to get a thorough patient history over the course of multiple sessions, and my hope is that PT’s will gain more awareness about this condition and as “gatekeepers” can help point patients in the right direction for diagnosis and treatment.

I am passionate about MCAS education and advocacy, and in the coming months will be sharing new resources including a book, patient spotlight stories, a photography project, and more. I also do public speaking for healthcare professionals (mainly physical therapists) to raise MCAS awareness. A plethora of wonderful web resources (see Resources section) already exist for MCAS, so the aim of this site is more focused on the Social Support section and the special creative projects.

Thanks for visiting and listening to my story!

This content is Copyright © Mast Cells United and is for informational purposes only, and should not be used as a substitute for medical advice. Always seek the expertise of a qualified medical professional for personal health questions and guidance in diagnosis and treatment.

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