Today has been an extremely painful and exhausting day. I started my morning off in Dallas with a lumbar puncture(LP) attempt x 3 in my neurologist’s office. When the Physician Assistant(PA) couldn’t get any fluid after the 3rd try (because I kept having excruciating nerve pain), she told me I would have to comeback another day. She explained I needed to have the LP done under guided radiology because it felt like I had a lot of scar tissue where she needed to go. Hearing that instantly put me in tears, my voice quivered as I asked her to please try again and promised to do better. The other PA (yes, double PA day) came up from her desk and rubbed my arm trying to comfort me. She assured me that I did everything I could and they’d see if radiology could work me in, so I wouldn’t have to wait any longer for answers.
Luckily, within 30 minutes I was headed across the street to main admissions to check-in for a lumbar puncture under radiology guidance. After the procedure, which had much fewer pain occurrences, the doctor explained a narrow spinal canal was the culprit for all the pain I felt in the doctor’s office.
While thankful I was finally able to get the LP completed, the downside was being required to lay down for 1 hour before I was allowed to leave. That hiccup had us leaving Dallas almost too late to make it back to Hurst for my pain management doctor’s appointment. Luckily though, traffic was on our side and my mom pulled into their parking lot with no time to spare.
I hadn’t seen this doctor in over a year because my CRPS had been under control until late May. So I get done telling him about my break through pain in my right hand but I was actually referred to him for full body pain that started in my mid-back about a month ago. My whole saga poured out, including being diagnosed twice with back spasms and being referred to specialist after specialist with no help. When I finally I finished talking, he immediately said, “sounds like a central nervous system issue.”
I immediately felt vindicated hearing his words, I uttered out excitedly, “that’s what I’ve been trying to tell people! So something like MS wouldn’t be crazy?!” He chuckled quietly and replied, “No, that’s exactly what I was thinking as the most likely [diagnosis].”
A doctor acknowledging I have some sort of CNS issue instantly gave me relief. The last 20 months have been hell but I no longer feel like I’m fighting for answers alone. The same day I get the spinal tap I’ve been requesting for over a year, a doctor says, “I completely understand what you’re telling me” and I know he means it.
I’m convinced if my CNS issue can ever be accurately diagnosed and treated, I’ll have a normal life again. Can you imagine all the things I’ll be getting in to when I’m able to walk and stand for 6 hours again!? I mean, seriously, think about how often you walk or stand for 6 hours? I used to do it during work and when I went out dancing. Oh and let’s not forget amusement parks, shopping days and sightseeing on vacations! It’s been sooooooooo long since I’ve gotten to do all day activities, I miss it so much.
Even though today was painful and exhausting, it was also extremely validating. In the the last 20 months I’ve experienced the worst pain, fatigue and depression of my entire life. I’ve cried more tears, sat in more waiting room chairs and lost more of myself than ever before. Today my pain management doctor took the time to actually hear me and offered to help however he could. He gave me back some hope today, hope I’ve desperately needed. I finally have a CT of my entire spine scheduled for tomorrow, TOMORROW, thanks to this doctor. I am so thankful this is all finally happening, I feel like I’ve had to wait long enough.