What do you do when you experience a myriad of symptoms but struggle to find a diagnosis? This is the boat I have found myself in for over a year. Some days the seas are calm, and I feel healthy. Other days the waters are choppy, and flare-ups occur. At times it feels that the hardest part is having no diagnosis – no set course to navigate back to land, to a body that isn’t constantly under attack by one wave of symptoms or another.
The Ever-Elusive Diagnosis
In 2018 I hoped to solve the mystery of my symptoms. I wanted a concrete diagnosis so that I could better research a path back to wellness. I had test after test and saw specialist after specialist. But I rarely received answers that would ease my worries and give me confidence for the future.
That’s not to say that everything was fruitless. After months of battling the sudden onset of severe acne near my mouth, my dermatologist took only a moment to diagnose the issue as perioral dermatitis. When I sought answers for my purple toes and increase of blood vessels in my left foot, my family doctor detected a heart murmur. A follow-up echo cardiogram confirmed mitral-valve prolapse. Multiple flare-ups and thus multiple trips to three different gynecologists finally resulted in the biopsy and diagnosis of sebaceous cysts.
But I still don’t know why my toes and the top of my left foot turn purple when I am standing or cold. My cardiologist said that my heart is not the cause. Multiple tests ordered by my vascular doctor have yet to diagnose my symptoms.
And there is an odd pain that I often feel on the left side of my abdomen. Both the endoscopy and colonoscopy that I had last fall revealed no known cause. A recent trip to the ER for severe pain in that region and in my back ruled out kidney stones. Though my appendix showed inflammation, the doctors could not diagnose my symptoms.
Update: On February 28th, 2019, I was diagnosed with May-Thurner Syndrome. You can read more about that in my follow-up post: Finally a Diagnosis: May-Thurner Syndrome.
Do Diagnoses Help?
When we experience symptoms, we all want to know what caused them. Sometimes a diagnosis reveals a root cause that, when treated, resolves the issue. But often a diagnosis only serves to give a name to the symptoms without providing the underlying reason for those symptoms.
Was I relieved that my dermatologist could diagnose my issue of perioral dermatitis? Of course! But she couldn’t tell me why I was suddenly plagued by acne. Instead I received a script for a month-long course of antibiotics which, after further research, I chose not to fill.
Am I glad to know that my gynecological flare-ups are only harmless sebaceous cysts that can be removed if needed? Yes! But I still don’t know why mine are painful when most women who have them never notice them. I suspect that a food intolerance may be the cause, but I am still in the process of confirming that with an elimination diet.
If a diagnosis merely gives a name to my symptoms but offers no explanation for the root cause, have I gained anything by that diagnosis? Even if doctors can diagnose my other health issues, will there be steps that I can take to not only treat the symptoms but to fix the causes?
What to Do While Awaiting a Diagnosis
Nourish Your Body
One of the major steps I’ve taken to combat my symptoms is to seek better nourishment for my body. I have chosen to do an elimination diet to attempt to pinpoint any foods that may be causing increased inflammation. When I eat, I focus on consuming nutritious food rather than counting calories.
Last spring I saw a doctor who analyzed my blood work to reveal my vitamin and mineral deficiencies. Since then I have gone from taking zero supplements to taking several a day. Testing is not cheap. Neither are supplements. But I have confidence that providing the nutrients my body needs will help me regain my health.
We all know we need less stress in our lives, but actually reducing our levels of stress takes being intentional. In my life, this looks like cooking the same set of meals on a regular basis and frequently serving leftovers so that I don’t have to worry about what’s for dinner. In other areas it looks like setting priorities for my time so that I have enough margin in my days and weeks for rest.
Let others know that, while you may appear healthy on the outside, you often don’t feel all that great. Not only may they be able to pray for you and help you in times of need, but they may have had similar experiences and can provide advice and resources that could benefit you.
Don’t Give Up
It’s hard to go to appointment after appointment and do test after test without finding any concrete answers. But medical advancements are made on a regular basis, and new information about achieving better health is constantly on the forefront. In the meantime, don’t give up. Focus on nourishing your body, reducing stress, and finding others who can support you on your journey to better health.