This is a long post, but it's also a long story, so I'm going to tell it in its entirety. I've got painsomnia/medsomnia tonight, so I might as well be thorough if I'm going to be laying here awake regardless!
Back in the spring of 2012, my feet started falling asleep. The numbness began at the metatarsal region and sent pins and needles through my toes. This had been happening for years during exercise, when I would go running in shoes that weren't quite right (too small for my size 11's, too narrow for my twisted toes, not built for over-pronation, etc.), which was annoying enough. I became concerned when it started happening for no discernible reason and with no obvious pattern. I had also begun to have some mild burning and muscle weakness in my right ring and pinky fingers. I've read articles from some pretty reputable sources - Hopkins Arthritis, for starters - that people with RA can experience peripheral neuropathy, so I brought it up to Dr. Rheumy.
He immediately dismissed it as something that isn't related to RA and had no interest in trying to get to the bottom of it. If I recall correctly, I think I brought it up on three separate visits, and got the same reaction each time. It was Dr. Primary who referred me to a neurologist, who ran a nerve conduction study and attributed it to - you guessed it - my RA.
Around that same time I woke up one morning, sat up in bed, and immediately went back down, in searing pain. Some muscle, somewhere in my neck or shoulder, had seized up and left me in a perma-shrug. It was so bad that I had to call my husband, who had just left for work, and ask him to turn around and come home. Dr. Primary's office didn't open until the afternoon that day and so I went to an urgent care office instead. The doctor there said I had a muscle sprain and prescribed Flexeril, a muscle relaxer. I went to Dr. Primary the next day because the Flexeril had turned me into a zombie, so he prescribed Skelaxin instead, which is milder and doesn't leave me stuck in an all-day nap.
I had also been having neck pain and was concerned about the possibility of cervical spine disease activity, so on my next visit to Dr. Rheumy, I brought it up to him. Once again, he dismissed my concerns and told me that RA doesn't affect the spine, even though it's another well-documented extra-articular manifestation of the disease.
I decided I was done with Dr. Rheumy when I needed to reschedule a routine visit with him that April. I had to bring Susannah to the dentist for an emergent visit and the next available appointment with the pedodontist was at the same time as my appointment with Dr. Rheumy. I called his office and was told that there were no available appointments until July - two months later! It had already been two months since my last visit, and waiting until July was out of the question, especially since I had been flaring. I researched rheumatologists on Vitals.com and Healthgrades.com and booked an appointment with a very positively-reviewed doctor in my area.
My first appointment Dr. Awesome happened to coincide with the next major episode of muscle spasm in my neck. I knew I liked him immediately when he didn't rush me in and out, even though the office was packed. He sat and spoke with me about my medical history, my symptoms, and my treatment plan for a half hour. (!!!) When I told him about the neck pain, I didn't even have to ask whether he thought it was related to my RA. He was right on top of things and sent me right over to their radiology tech for some x-rays. (I love that they have x-ray, labs, AND an infusion center on-site!) Those of you who have chronic conditions know how hard it can be to convince a doctor to order even simple diagnostic testing, especially on the initial visit. It was like I had walked into a spoonie's dream!
Dr. Awesome saw that my cervical spine was so tortured by muscle spasm that not only was it straight (it should curve toward the front of the neck), it was actually starting to curve in the wrong direction. He also saw what looked like potential rheumatological activity at the odontoid process. I left that appointment with a script for Skelaxin every 8 hours for one month, to relax my neck, and an order for an MRI.
Thankfully, especially considering atlanto-axial instability can cause serious neurological damage, and even death, the MRI showed no issues in that part of my cervical spine. The downside was that it did show two bulging discs impinging on the thecal sac, which is the membrane that surrounds the spinal cord. I was in a minor car accident back in college, and that's the only event I can think of that would have led to cervical disc disease.
Needless to say, it was a relief to find a rheumatologist who does not dismiss my concerns. Dr. Rheumy didn't even do regular joint examinations beyond taking a
quick look at my fingers! I didn't realize that a full joint exam should
be done at every rheumatology appointment until I started seeing Dr.
Awesome and then read up on the subject on Google and some of my
favorite blogs.
Even if I bring up an issue that is unlikely to be related to RA, Dr. Awesome does his best to get to the bottom of it by either running labs or recommending that I see another doctor in whatever sub-specialty is most relevant. A recent example was this past fall, when I had multiple episodes of sudden weakness in my thighs and upper arms without any exertion. I hadn't seen the neurologist in months and when I brought it up to Dr. Awesome - who seemed genuinely worried - he asked me to book an appointment as soon as I could get in. The neurologist wasn't all that helpful; his opinion was that it was, "either stress or an autoimmune neuromuscular disease," and he referred me to Dr. Irish, the neurologist who shares an office with him.
I still haven't found a resolution or definitive diagnosis for the neurological issues I've been having, but I have a working diagnosis of Myofascial Pain Syndrome for the muscular symptoms, and an order for an MRI of my lumbar spine to investigate some painful spasms I've been having in my feet. I've also had the joyful experience of going from a few random ocular headaches this past fall to what he's now calling chronic migraines...I'd go into more detail but this post is already long enough!
If I hadn't "fired" Dr. Rheumy, I probably would have just kept taking Skelaxin and hoping the pain would go away on its own. I wouldn't have gone back to the neurologist, wouldn't have found my way to Dr. Irish, I would be miserable with pain and I would still be convinced that I had something terrible like a brain tumor. (Seriously, I was near tears every time a migraine came on, convinced that I was dying.) I'm still in pain, but at least we're trying different things to relieve it, like trigger point injections and prophylactic migraine treatment. Dr. Irish has also recommended seeing a chiropractor and Dr. Awesome suggested acupuncture, and gave me a script for medical massage therapy.
I've been saying this since I struggled with recurrent miscarriage back before Susannah was born: if you are unhappy with a doctor, or just feel like they're not really listening to you, then do not be afraid to try someone else. You are paying your physician for a service, and if they aren't performing that service satisfactorily, it is your right as a patient to seek alternative care! Find recommendations from friends or family, look through websites like Healthgrades and Vitals, try Angie's List, or ask a trusted medical professional - your kids' pediatrician, your dentist, etc. - who they would recommend. There is no reason to waste your time and cause yourself unnecessary stress because you feel obligated to continue scheduling visits with the doctor you've been seeing. If you went to the salon and got a bad haircut, brought your car to a lousy mechanic, etc., you certainly wouldn't go again, right? Right.
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