My symptoms started about 7 years ago. A mystery tingle in my left shin. It would come and go with no predictable pattern. Sometimes it would wake me up in the middle of the night. Sometimes sitting for long periods would bring it on. Sometimes alcohol would trigger it. The only "cure" seemed to be to walk it off.
I was doing a lot of running, so my first visit was to my Sports Med. When there was nothing he was able to diagnose, he sent me to a neurologist for some nerve testing. Everything firing "A okay". A medical mystery. As I got used to it, the periodic tingling became more of a nuisance than anything else, so I continued on with life (and running).
About 2 years ago I was woken in the middle of the night by a searing pain in my lower back. What the heck? I tossed and I turned but there was no relieving the pain in bed. Getting up and moving around for 20 minutes - problem solved (but of course by then I was too awake to go back to sleep). This continued on random nights for 6 weeks before I decided it wasn't just a pulled muscle or other running injury. The pain manifested in the lumbar area over my left hip ... it felt muscular. The pain was no where near my spine, I had no mobility issues and the pain went away quickly after mobilizing. I'd been around the block more than a few times with running injuries, so knew to give things six weeks to heal on their own before persuing it. In August 2010, with the six week time period duly elapsed, I trundled off to my Sports Med. Again, a medical mystery, but he sent me off for a lumbar and hip MRI. Finally in October 2010, it came back as totally normal aside from the very beginnings of rheumatoid arthritis. Ahhh, if the MRI had only gone up another 8cm (3") they would have found Herm.
Well, arthritis isn't a sports thing, so I went to see my family doctor. I didn't tell her I'd been through a series of tests with someone else, I just gave her my story. She sent me here, there and everywhere. To a pain clinic, for x-rays and blood work and came back with the same diagnosis ... the very early stages of rheumatoid arthritis. Everything you read about rheumatoid arthritis tells you that the earlier you start specialized treatment, the better your long term prognosis, so I asked for a referral to a rheumatoid specialist.
She said no.
Really? No? But, having the same diagnosis from two separate sources is pretty concrete, so ... okay.
Over the next several months I started to get the back pain in the middle of the night more often and more severely. The tingling in the leg was more frequent. I did all the research I could find on rheumatoid arthritis and the diagnosis started to feel more and more wrong. It just didn't feel right. Even my daughter asked me when I was going to get my back figured out. Well ... okay.
In September 2011, I found a new family doctor, told her my story and asked for a referral to a rheumatoid specialist. Without hesitation she referred me to someone close to my office, appointment duly made for a few weeks away, and off I went. The specialist asked me a lot of questions, bent me this way and that way and finally came to a conclusion. Her diagnosis? I had something, but not something that she does for a living. She thought there was a very remote possibility that it could be ankylosing spondylitis, but I don't have any of the other symptoms. Just to be sure, she ordered an MRI. 3 months later, I finally got my MRI appointment ... well, I'm presenting as mild rheumatoid arthritis, so I wasn't exactly a medical priority, and I didn't push for an earlier appointment either. Why would I?
My appointment was for 9pm on a Tuesday night. No big deal ... full head and back MRI took an hour and a quarter. The technician told me it would take 7-10 days to get the results to my Dr., so not to worry if I didn't hear anything before then.
My doctor called me the next morning.
That's the call you don't want to get. "Um, I think we might know what's been causing your hip issues but I need you to come see me". "Tomorrow". Oh boy. Denial is an amazing thing. I chose to deny her sombre tone, serious demeaner and super-pleasant manner. She told me she was referring me to a neurosurgeon, and I asked her to write down the diagnosis on a piece of paper.
Her parting words to me: "Be careful about how much importance you give to what you find on google".
Wise woman. Dr. Google is dangerous.
As I look back the what if's are staggering, but the biggest lesson is to listen to yourself, your body and your symptoms. If no one will believe you, keep searching until you find someone who will. I could have ended up paralyzed because my family doctor sent me to a pain clinic instead of a neurosurgeon.
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