Allison Hawley- like so many other sarcoidosis patients- has had a tough time getting a diagnosis. Her journey has been filled with misdiagnoses, complicated tests and procedures, and doctors scratching their heads. Allison attended the FSR Patient Conference in Phoenix this past winter and connected with another woman from her area. Together, they recognized the need in the local sarcoidosis community and set about starting a support group. We wanted to share Allison’s story, as it will resonate with many other patients who have gone through the process of searching for a diagnosis.
I’ve never been the most tenacious person. I skated through most of the difficulties I’d come across in life, even the hard things. I’d been through a divorce, learned to raise my children alone and pay the bills and mow the grass. Problems got solved. Things got better.
Getting sick changes that… It teaches you that skating is not going to work this time and that you are going to have to study and research and bully your way into places you never thought you’d want to go. I always thought qualities like tenacity were innate, you had them or you didn’t. This is simply not true. Not for me. I had to learn how to be tough.
I still don’t know what it was that initially made me so sick. Two weeks I barely remember. At the time it didn’t seem urgent, maybe just the flu or a reaction to recent flu shot. Eventually, I went to Urgent Care and got some pills and rejoined the human race. A trip to Mexico with my family was on the horizon and I was determined to go, but I still didn’t feel great. I was getting a weird zapping down my spine when I moved my head, I was exhausted and slept endlessly. In Mexico, I had the first of a few episodes where my body went numb, head to toe. I went to the hospital there and was given fluids for dehydration. Within a few weeks the numbness stuck around. A spot on the bottom of my foot spread up and over and I started reading, researching. I needed to find a Neurologist.
This story will turn into a tome if I list the myriad of doctors I saw and their diagnoses. I don’t blame them, but I do wish I would have come across one doctor on my journey who was driven to solve the puzzle. Within a year I went from a diagnosis of Vitamin B12 deficiency to brain stem tumor. With my newfound tenacity, I managed to secure the absolute best Neurosurgeon in Arizona and possibly the world. Dr. Robert Spetzler opened up my neck, took a sample of whatever was growing in my upper cervical spinal cord, and came out and told my family it was neurosarcoidosis. Let the googling begin.
But, the specimen Dr. Spetzler took was inconclusive. I finally had an MRI of my entire spine and they found several enhancing lesions on the inside of the cord, so MS it was. I took the medications, joined an MS support group and became best friends with PubMed. If I was going to have MS, I was going to do it right! I infused with steroids, took the medications and went downhill. I decided to go to Mayo Clinic to try to get this figured out. Their reputation for research gave me hope – and well, it’s Mayo, the holy grail for rich sick people and the rest of us who have great insurance.
The Neurologist there assigned me to his Fellow and for a year we tried several MS drugs with no luck. The lesions in my spinal cord multiplied. I was incontinent, limping, falling down, exhausted. I went from cane to walker and developed Trigeminal Neuralgia. I lost my job and my marriage. The Neurologist took over and the MS diagnosis went away, along with the Fellow.
With MS, the lesions scar. Mine did not. They ‘smoldered’ and lit up with every MRI. There were no lesions in my brain. Steroids didn’t help. This was not MS. But without a positive tissue sample I couldn’t be given a diagnosis for neurosarcoidosis either, and they were hesitant to go open up my spinal cord for another sample. Doctors get a little hinky about messing with spinal cords.
Recently, I decided to try to get a handle on the Trigeminal Neuralgia and opted for a procedure called Gama Knife Radiation. They basically zap the Trigeminal nerve with radiation to stop the debilitating pain. Prior to the procedure they do an MRI and the Neurosurgeon and Radiologist study it to determine exactly where to radiate. I was waiting for them to get that figured out but the Neurosurgeon kept coming into my little room with questions. Had I had Gamma Knife before? Nope. Had I had Meningitis? I had not. Eventually he said we could go ahead with the procedure but they found something that they’d never, in 30 years, seen. My trigeminal nerve was enhancing with the gadolinium. They seemed a little freaked out, but in my mind, it meant someone finally found a brain lesion and I could again be treated for MS.
I was wrong. It may be rare, but that nerve lighting up has been seen in neurosarcoidosis, not MS, and I am now just waiting for a PET scan to confirm the diagnosis. It sounds strange to people who haven’t been down the path of a difficult diagnoses to understand our need for an answer. How could bad news be so welcome, such a necessity? Because doors will open, new medications will be available. Because maybe I one day I can throw away my walker and not feel crappy and not want to sleep all the time. Because when people ask what is wrong with me, I’ll have an answer. Because maybe this time the problem will get solved, maybe things will get better.
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