In June 2022, I had my first visit with my new rheumatologist. Because of the ongoing pain in my forearms (and my unremarkable EMG), he referred me to neurology. That neurology appointment recently took place, in February 2023, eight months later.
I was born with cerebral palsy and I have never been to a neurologist. That will probably surprise some and not surprise others. Some babies with CP see a neurologist right away, and other people with CP go their whole lives with only a primary care provider. People’s experiences, resources, access to services, and co-existing conditions are as varied as the people themselves.
Once again, my husband took me to the big city and “worked from home” in the waiting room. My appointment was with Dr. X, but another doctor, a female DO, began the appointment, and I gave permission for a male doctor (an intern? I forget) to observe. I am officially at that age where I am inclined to put the modifier “young” before both these doctors.
She began by listening to my history and asking questions about weakness, fatigue, etc. She even asked about my celiac diagnosis and whether it’s well-controlled. No. No it is not; numbers are still high. She also asked whether other autoimmune diseases run in the family.
Then she started the physical assessment, explaining to the intern what she was doing and asking him questions. He got my positive Babinski reflex correct. (This reflex is supposed to “disappear as the child gets older.” I just looked it up.) I was familiar with the strength tests on my legs, of course, the checking of reflexes, the way my ankle flexes repeatedly in sustained clonus in a way that I could never replicate intentionally.
Then she moved on to my upper body. I don’t ever remember having my upper body reflexes assessed. Well, they must have done some of this before the EMG. The EMG team used a giant safety pin to prick my skin in various places and then placed it in the sharps bin for incineration. Here, she used a broken tongue depressor, its shards just as sharp. I could feel the sensation evenly throughout the body, wherever she pricked. The upper body assessment is similar to the lower body, testing whether I could press into or push against her hands using different muscle groups. She tested reflexes. Used tools to see if I could feel cold and vibrations.
Eventually they left and conferred with Dr. X. When the trio returned, Dr. X said something along the lines of “You have many different things going on! It can be difficult to know which condition is causing which symptom.” Yes, thank you for acknowledging that.
She pulled out her instruments and repeated some of the tests. When she got to my clonusing right foot, she invited the intern over to do the left. Glad to be of service. Seriously though, every adult with CP out there would probably love to help doctors learn about CP in adults! We want to be seen and understood and helped.
So, yes, the reflexes in my legs are strong. Watch out with that hammer on my knee because I might kick you. We are not surprised by this, as it’s pretty textbook CP stuff. But then she did a couple tests on my hands and arms and was like, “Wow! Strong!” Like, not in a good way. English is not Dr. X’s first language, and I didn’t always follow what she was trying to tell me. I think doctors in the US are trained not to show surprise or alarm, though, and Dr. X definitely let her feelings show. It’s kind of nice, I think. Validating. Except that she kept asking if I lose control of my bladder or bowels, and said that if that does start happening I should contact them right away. Hmmm. She suspects a herniated disc in my neck, which is when a disc compresses a nerve. I had a positive Hoffman’s sign, which can also indicate compression of the spinal cord. (See Cervical Myelopathy). Get this, someone with a compressed spinal cord can have a spastic gait. I mean, it’s a little bit funny.
It’s like that song from Sesame Street: “Three of these things belong together. One of these things just isn’t the same.” My version would go like this: “Three of these things are CP-related; two of these things could be CP-related but also could be several other things that are completely unrelated.” Catchy, no? I could make a Venn diagram with CP, cervical myelopathy, and fibromyalgia, and there would be a significant overlapping middle section. Fibromyalgia is something I’ve been thinking a lot about recently that makes a lot of sense with my symptoms. I asked Dr. X about it. She kind of chuckled and said that’s not her area and that I’ll have to ask a rheumatologist. Will do. At my next appointment in June.
Anyway, Dr. X ordered a cervical spine MRI and told me to schedule it as soon as possible. (For the record, the doctor who conducted the EMG recommended the same thing, and I reaaaally didn’t want to have another MRI.) If that comes back normal, then I’ll have to get a brain MRI. Yikes, nope. No thank you. Someone sedate me. I’m trying not to freak out about this c-spine one, and I think I will have some medication lined up beforehand. When scheduling the MRI, I said yes to being claustrophobic. I don’t think it’s claustrophobia, exactly, but more the triple whammy of a small space, unpredictable loud noises, and that I am required to hold still. A person with spastic CP cannot hold still when there are loud noises! If I were allowed to crawl in that tube, move as much as I needed, and take a nap in the quiet, I think I’d be fine.
I’m in one of those situations where I’ve had a new appointment with a new specialist and I’m thinking, Maybe this is the one who will figure something out. This is the one who will find the issue and know how to help me. Maybe I have not only an overactive amygdala, but also something actually physically out of place. I’m kind of hoping for something to be wrong, to have–apparently a unicorn in medicine–a definitive answer. I asked Dr. X what we do next if there’s a herniated disc, and she said she’d refer me to a surgeon. Huh. That doesn’t sound great. I did some research, and most herniated discs aren’t surgical, but I also don’t have a lot of hope that the non-surgical treatment options will help. I feel like I’ve done most of them. But I haven’t done most of them with “herniated disc” as a diagnosis.
At least I have confirmation that there are some things going on with me that aren’t right. I’m a bit frustrated and sad that I’ve had these neck issues since at least 2016 (I first vomited from neck pain in 2008. Who knows if that issue is this issue.) I’ve done the doctor appointments, PT, ultrasound, massage, acupuncture, heat, ice, NSAIDs, etc. We’ve all figured it’s from CP/posture/aging, and nothing has helped. It’s exhausting to be in constant pain. It isn’t easy to balance accepting how CP affects an aging body and pursuing further medical care in case it’s actually something else. Of course whatever is going on with my neck and arms is surely posture/aging related. What I mean is that, if I didn’t have CP, we might have arrived at the neurologist years ago.
I feel like this is kind of a PSA to the cerebral palsy community: Yes, we have to live with a lot. Yes, we will most likely experience an increase in pain and a decrease in function. But if something new comes up, don’t automatically accept it as “just part of living with CP.” If you feel like something isn’t right, you’ve got to advocate for yourself until you feel satisfied that you’ve pursued the possible answers.
Sending love out into the world. Sending patience. Sending hope. We need it.
What Happened to Your Legs? 