Having more than one disease complicates everything. Most of those diseases being rare and understudied turn those complications into catastrophes. Doctors don’t know what to do with you and they truly don’t care to try. When you are already suffering from a mystery, the last thing you want is for your doctor to quit helping. Sometimes that dismissal seals a sufferers decision to give up. It reinforces their anxieties and amplifies their pain. Along with hope, their motivation for life disappears.
I asked for help everywhere. At first, I didn’t know what was happening to my body. My early symptoms were dismissed as typical illness and injury. I was told to wait. Wait for relief. Wait for testing. Wait for medication. Wait for it to go away on its own. Nearly 7 years later, I am only alive because I didn’t keep waiting. I pushed even when I didn’t have the strength.
My first hospital and doctor experiences were awful. There was no interest in my case. There were misdiagnoses and poor advice givers everywhere. It was incredibly difficult to find a primary doctor who would take me on as a patient. Eventually, I found a small town physician who was known for not giving up on patients. He was not a miracle worker, but he listened and actually looked into my weird symptoms.
After some testing proved that my symptoms were not imaginary, we agreed to send my case to the major diagnostic hospitals in the country. They all denied my application. Places like Mayo Clinic, Johns Hopkins, and the National Institutes of Health wrote back with letters stating that they had nothing to offer and would not look into my illness. It was a pretty disappointing time since my doctor was unsure of how to help me and I was holding out hope for a diagnostician who could create an effective treatment plan.
Eventually, we cobbled together enough local specialists who were mildly interested in my condition. They were all at different locations and held a variety of theories about how to proceed. Then I was hospitalized, again. My heart kept trying to kill me. This time it was at a major regional teaching hospital. It was a minor relief to be treated under one roof. At least at the teaching hospital, students and researchers kept doctors more engaged and on the cutting edge of medicine. I was there for 14 days. Through that time I had many tests and ALL the blood work. The diagnosis came towards the end. I had Postural Orthostatic Tachycardia Syndrome and Ehlers-Danlos Syndrome.
Relieved to have names to what I was experiencing but wreaked from being hospitalized for two weeks, I worked on treating the symptoms. I was experiencing relief but also disappointment that my body kept rebelling in different ways. I had massive migraines and nerve pain that were not related to my diagnosis. Why was I in so much pain?
It had been years of almost answers and I just wanted to know what was wrong at the top. What was my umbrella condition? All these issues couldn’t possibly be showing up as stand alone diseases, right? More years, more tests later, I was diagnosed with Small Fiber Autonomic Neuropathy (I’ll go into that process another day) and Chronic Daily Migraines. Somehow, my list of conditions kept growing. Keeps growing.
I still have the same small town doctor who initially took me on. He has been instrumental in getting me in the door with specialist and encouraging diverse treatment options. Even with his help, I can’t get anyone to find my overarching condition. Surprisingly, doctors seem extremely resistant to the idea that a body’s diseases are interconnected. What seems so obvious to myself and people outside the medical field is pushed against and argued by the doctors.
I stopped searching for a cure to my broken body a while ago. I still hold out hope for a miracle but now I am focused on finding useful treatments and learning the interconnectedness of multi-system diseases.
On a personal rant, from a non-medically educated perspective, it appears as though POTS, EDS, and Gastroparesis cluster together. People with one of these conditions often experience symptoms of the others. Women are especially vulnerable and have a glaring overlaps of the three. Autonomic small fiber neuropathy is a full body disease and is not mentioned much in medical literature. I am still at a loss for its explanation but it is definitely a part of RLS and likely MCAS. Migraines are a terribly common condition. Although they are well studied, a cure and a cause both remain mysterious. But what do I know? I’m just going through it everyday.
If anyone out there finds an umbrella, let me know.