Jenny's story of diagnosis:
Since we moved back to the States in 2015, I’ve been trying to find answers. I’d been having lots of problems, most notably fatigue, pain, short term memory loss, and brain fog. My first primary care doctor put me on prescription strength vitamin D and was obviously not interested in pursuing this further once my D levels were up (and they weren’t majorly low to begin with). My second try on a doctor gave me a vitamin B shot, then sat me down and told me I needed to go home and rest and manage my stress. When the vitamin B shot didn’t work, she suggested I take a multivitamin (I already did). For my third try, I decided to use an internist for my primary care provider. He diagnosed me with fibromyalgia. That made complete sense given my symptoms, until...
I woke up one day last spring and couldn’t walk properly. I was limping on my left leg. I didn’t limp because of pain; rather, I would reach a certain point in my gait and my left leg would give out. After a couple of weeks I called and referred myself to physical therapy. I went for eight weeks and did water therapy, then I did another eight weeks on land. I was strong, but my limp was worse. My therapist told me to start using a cane because I had come close to falling a couple of times. Early on in PT, my therapist suggested I see a neurologist, because this wasn’t normal for someone with fibro.
My internist sent me to my first neurologist. She saw me several times. I had an EMG and MRIs of my brain and entire spine. No lesions were found. She then referred me to another neurologist group that specialized in neuromuscular disease.
During this time I started experiencing tremors in my head and hands. My internist initially thought it was due to a medicine change we had made but the tremors persisted after reverting back.
I was seen by a PA in the second neurology group who ordered more blood work and another EMG. The neurologist who did my EMG told me that the PA would be deciding my next steps. She would be diagnosing and treating. At my follow up with her, she referred me to a third neurologist who specializes in movement disorders to try and find the cause of the tremors. She also stated, “I don’t know what I’m going to do about your leg yet.” She gave a prescription for a walker and yet another medication.
When the third group called in January to make my appointment, they couldn’t see me until May 15. May will be one year since I began limping.
I had been thinking about the Mayo Clinic for awhile, but it will be a very expensive trip, so I really wanted to exhaust my options here first. But it seemed like I was progressing too quickly to wait even three months more. I have days where the fatigue is debilitating, where I don’t feel comfortable driving, where my right leg starts to give out too and I can’t walk more than a few steps, where the tremors are so bad I can’t hold a cup.
So I referred myself to Mayo. In less than 24 hours they had me set up with an appointment on March 12 with an internist, multiple tests, and a consult with a neurologist on March 15. Their communication is flawless. I know where to go, when to be there, what to expect, and how to prepare for my tests. I finally feel like I’m going to get the help I need.
That was long, but now you know. Thanks for being there and praying for me, friends