Advice for getting a diagnosis and better treatment
The best way to get as much of your life back as possible is to get an accurate diagnosis, then to get the best available treatments. Sounds obvious, but since dysautonomia is still a frontier of ongoing research, someone not dedicated to the specialty may well have a stale and limited assortment of options.
Even a brilliant general practitioner can’t be relied on for all the answers.
Your general practitioner (GP) won’t have all the answers, or necessarily know of the best specialist for you. They can be great at pointing you in the right direction, but you’ll have a lot more time to put into your own medical plan than she will. My GP thought her consulting cardiologist was great, so she trusted his tiny list of treatment options. Little did she know there is a very big list of drugs options, with more still becoming available. Search online and ask a Facebook group for recommendations. Go to the source and find a great specialist for an assessment.
If your specialists are stumped, find one experienced with dysautonomia.
Dysautonomia is one of the toughest things to identify, because of the long list of vague symptoms that can overlap with other common health issues. Good chance many or all of your labs and tests will come back totally normal. This doesn’t mean you’re crazy because everything is actually fine, but that they’re not looking in the right place yet. If you’ve seen a few specialists and they turn up nothing or suggest that you have a simple diagnosis that doesn’t seem to fit, look into dysautonomia. Maybe you’ve been diagnosed with gastroparesis, but it doesn’t explain why you feel light-headed and fatigued all the time. Maybe you’ve been told you have an anxiety disorder (a cliché for POTS* patients), but it doesn’t explain why you have joint paint, no appetite and fatigue.
Find a doctor with experience with your condition.
If you’ve finally been diagnosed it might be time to find a true specialist. There’s no substitute for an expert, especially one with honed experience. If you’re still struggling or see room for improvement, go see an expert if it’s possible. Who better to provide the best options than someone who specializes in your condition and has lots of other patient experiences to reference? They should be apprised of the latest drugs and studies. A more generalized doctor probably won’t be able to measure up.
Make sure you find any underlying cause of your syndrome.
A good specialist will definitely try to identify any root cause of your syndrome, because treating the primary cause should be much more effective than treating the downstream symptoms. If you had a leaking raft you wouldn’t just pump the bilge water without trying to find and fix the leak. It could be Lyme disease, trauma from a car accident, or an underlying mast cell disorder. Not every dysautonomia has a [known] causal condition, but finding a suspected source can open up more effective treatment options. You may also find a comorbid condition that could be making your other symptoms worse- like anemia or a B12 deficiency.
Write down all your symptoms.
Even include the ones you don’t think much of like a contact lens sensitivity that’s cropped up or back pain that just seems normal these days and vague ones like fatigue. Group your symptoms into categories like gastrointestinal, pain, cardiovascular, respiratory, mental, vision, skin/dermatological. This way they’re easier for a doctor to process. It should also become clear if your issues are more systemic, as it is for most dysautonomia patients. Also include a brief timeline of major health events like fainting episodes, development of new allergies or intolerances, and other diagnoses.
Don’t be afraid to “fire” your doctor at the hospital or ER.
Everyone has a right to refuse care, and that includes refusing the care of a particular doctor or nurse. If you’re in the ER and know you need an IV, but the PA thinks you just have anxiety- ask for someone else. Admitted to a hospital and they’re still dismissing your symptoms?- dismiss the doctor from your care. Right before my POTS diagnosis I had an awful hospitalist (with an awesome Russian accent) who was dismissive and inattentive. She was ready to release me with a prescription for beta blockers and without a diagnosis. Though enraged, I politely told the nurse I refused to see that doctor again and needed another one, which landed me the director of the floor- a comforting and tenacious physician. Though he wasn’t experienced with POTS, he kept bringing in specialists until there was an answer. My favorite nurse told me that a lot of people don’t know that they can turn down a crappy doctor at a hospital. Remain calm and do it!
* POTS- Postural Orthostatic Tachycardia Syndrome