A strange new symptom often means more doctors. This time it was me instead of my daughter, with weird, deep nerve pain having developed throughout all of my extremities in the months following hip surgery.
As the weeks passed, my limbs slowly began to feel more and more like they weren't getting enough blood, with constant pins and needles growing continually more painful. Overexertion caused a deep, searing pain in my arm. It felt like my tendons and veins were being strangled, and I could no longer put off seeing my Neurologist about this painful new nerve-related symptom.
Fortunately, my neurologist had been recommended to me years ago by a family member. He is not at all arrogant, openly admits when he isn't familiar with certain conditions, treats me like an intelligent partner in my own care, and encourages me to research things. Too good to be true, right?? Well, in some ways, yes. Unfortunately, he doesn't feel comfortable diagnosing or treating rare conditions like Periodic Paralysis because he has no experience with it. I have come to realize this is sadly the norm when trying to find a doctor willing to diagnose a rare disease.
For this new nerve pain, my Neurologist felt it best to refer me on to a Rheumatologist for in-depth testing. And just like that, I was cast back out into the challenging pursuit of finding a new doctor. Most patients just accept the Russian Roulette of being passed along to another specialist in the same medical network. However, a quick look into the Rheumatologists listed in that pool of candidates made it clear that was not a good avenue to take. Their patient ratings and reviews were pretty bad.
Trying to find a new doctor is a tough proposition. Plenty of specialists will take your money, offer no insight or assistance, downplay or disregard your symptoms, and often put unhelpful or unwarranted notes in your medical record. In many instances it’s pretty clear they are simply sifting through potential new patients in search of their pet conditions, the ones they feel most comfortable treating.
Now, if you are looking for a Rheumatologist to treat arthritis, the search is easy because that is their bread and butter. When your issue is something most likely relating to a connective tissue disorder, as my Neurologist believed mine was, the search for a Rheumatologist becomes drastically more difficult. Throw in the fact that you also have a rare familial genetic disorder that no doctor wants to be responsible for diagnosing, and you are suddenly looking for a needle in a haystack. In this instance, I really had to do my research.
My neurologist has a particular affinity for the Mayo Clinic, and had previously referred me there in what ended up being a failed attempt to get the Periodic Paralysis diagnosed. I figured I would look into it nonetheless. With just one call to Mayo's Rheumatology department, I quickly learned that wasn't going to be an option for me either. I was told that department wouldn't see anyone whose rheumatological issue was not already diagnosed, but they also would not see anyone who had been diagnosed with myalgia. ...Wait, what?
So what next?
When embarking on the search for a new doctor, it’s beneficial to seek credible recommendations. I have found that condition-specific medical groups on Facebook are the best place to ask for recommendations for specialist in your region. The group members are patients who know firsthand which doctors are good and which are a waste of time.
The next step is looking online for reviews about the doctors you are considering. You will frequently find this type of information on sites like healthgrades.com and vitals.com. I know I have left warnings on those sites about some really bad medical experiences myself, hoping to spare some of my fellow chronic illness sufferers.
Of course, don’t be afraid to call the provider’s office and ask any additional questions before scheduling an appointment. Keep in mind that the doctors you choose work for you. It's perfectly reasonable to be picky.
The outcome of my search? Well, I was fortunate again. I got a personal referral by another family member to an open-minded Rheumatologist who was actually willing to take me as a patient, even after hearing about my medical complexities. She ran loads of blood tests ruling out a whole host of possibilities, but ultimately was unable to determine the underlying cause of my vexing nerve pain. I was truly disappointed because this is a nerve pain commonly experienced by others with my suspected form of Periodic Paralysis, including my daughter.
Thankfully, I took some additional advice along the way and added a plant-based omega and a third concentrated fruit and veggie blend to my daily routine, this one being a berry blend. Shockingly, after just a few weeks of adding this, my symptoms began to ease. After a couple months my nerve pain had decreased significantly… and without the need for any pharmaceuticals and their accompanying side effect risks. It makes sense because berries are another natural anti-inflammatory and detoxifier, and my Neurologist strongly suspected my pain was caused by inflammation in my connective tissue impacting my nerve endings.
Although I have some mild residual nerve symptoms on occasion, I still count this as another loss for western medicine and thankfully another win for Mother Nature. Sadly, my daughter hasn’t had quite as much benefit as I have, but improvement is still a win. I also came away with a new Rheumatologist I have a good deal of confidence in, just in case any future need arises.