Neuro Follow-Up and Being Manipulated

I recently had my neurology follow-up with Dr. X to discuss my cervical spine and brain MRIs.

She said my brain looks good and my labs look good. She said the mild disc bulges in my neck are indeed very mild and shouldn’t be causing pain. She does not want to order steroid injections for something so mild, and agree, even though I’ve had constant neck pain since June of 2016. Then she did a quick reassessment of my strength and reflexes and said they are the same (no surprise there; it’s been three months). 

The small lesion in my right brain could have been from any number of things (perhaps even CP), and we don’t have any earlier images to compare it to. It does not explain my burning forearms.

The only thing Dr. X thought it might be is small fiber neuropathy caused by celiac disease. The treatment is to manage the celiac disease through diet, which I’ve obviously already been trying to do since my diagnosis almost five years ago. I could have a skin biopsy done to confirm, but it wouldn’t change treatment, which is only symptom management. I could try gabapentin (didn’t help), physical therapy (didn’t help), or duloxetine (nope; gelatin). I could try over-the-counter lidocaine cream. Okay, sure. It’s a little frustrating to be given options I’ve already tried, but I guess I don’t expect my doctor to actually be familiar with my history. 

Johns Hopkins describes the symptoms of small fiber neuropathy as “pins-and-needles, pricks, tingling and numbness. Some patients may experience burning pain or coldness and electric shock-like brief painful sensations.” It doesn’t really sound like what I’m feeling except the burning. It’s more like a deep, painful ache that can feel sharp. Though I have had burning toes as well, since 2014, and small fiber neuropathy often begins in the feet and works its way up.  

Whatever it is, it doesn’t seem like there’s a whole lot more to do. No surprise there. 

Here’s the funny part. Dr. X asked to see me walk. I do not enjoy providing a walking sample in an exam room. There’s about three steps to the door from where I was sitting. But I got up and did it anyway, no trekking poles. As soon as I took two steps, she started saying, “Slow down.” Now, I cannot slow down, as that would take control that I do not possess. I thought she was saying slow down because I was already at the end of the room and she hadn’t had time to really see my gait. But then she said, “Be careful,” and she was up from her stool and taking my arm because she did not want me to fall. Now, English is not her first language, and I think culturally, we’ve got some big differences as well. But she’s a neurologist. The majority of patients in and out of that office were using some kind of mobility aid. Isn’t she familiar with CP gait patterns? Oy. 

When it was time for me to go, I got my poles and stood up, and there she was, trying to take my arm and telling me to be careful. And again, as I went through the door, telling me to be careful. Obviously I understand that this reaction is coming from a place of care. But. I am forty-two years old, and I have come to this exam room on my own using poles. Therefore, the other adult in the room should infer that I know how to handle myself to get safely back to the waiting area, even if I had a wheelchair and/or caregiver out there waiting for me! And she should also know that the words “be careful” have never, ever actually helped anyone, but that they do, in fact, convey loads of condescension. Goodness, thank you, doctor! That’s what I’ve been missing these forty-two years. I have never realized before that I should move with care. No one told me! But now that I know, I shall handle living in my own body much better. (I didn’t say any of that, of course.)

In other news, I’ve now had two osteopathic manipulation appointments at my local hospital. I got this referral by having an office visit with a new doctor when my regular PCP was out. It’s so nice when doctors try to help you without you asking for it. The appointment had nothing to do with CP or chronic pain, but I did mention those things. This new doctor gave me some new options, ones that I hadn’t known existed. My PCP has been my doctor since 2012 and has seen me for every new chronic pain that has come up, but she’s never suggested anything like this. As far as insurance coverage, osteopathic manipulation counts as a regular office visit and is part of my allotted physical therapy visits, unlike massage therapy, for example, which is not covered. In addition, I get a 40 minute appointment, which means at least 30 minutes of it is actually treatment, unlike with a PT session, which is 30 minutes total. 

The appointment is at the hospital, not at a physical therapy office, but the table inside the exam room is more like a PT table, with a real sheet over the crunchy paper strip.

I lie on my back and get mushed and pushed and pulled on. And I really like it. In the first session, the doctor told me the right side of my ribcage was compressed and that I should lie down flat with my right arm bent over my head to stretch it out. And I should also let my right leg relax outward when I’m lying down. Two positions to work on while lying down? That I can do. I was pretty sore afterward, but other than that, I didn’t notice any difference. 

During the second session, she worked a lot on my right hip, because that’s where a lot of my pain is. Then when she was checking my ribs she lifted my arm and said, “We’ve got to work on your forearms! When they’re tight, they pull your shoulders forward and affect your posture.” Just by touching my arm, she could feel an issue. Yes, they’re tight. Yes, I do try to stretch them. I’ve tried massage and moist heat, and taping and rolling. Nothing I do seems to have any effect. Just that first PT in June of 2020 succeeded in helping. The second PT did the same things, but it didn’t help, and neither did work with a myofascial release therapist. Hence the last three years of trying to figure out what’s going on with my forearms. Is the burning just my nervous system overreacting to extreme tightness? If so, why don’t the muscles let go even a little with stretching and/or other professional intervention? Maybe it’s not small fiber neuropathy at all. 

What if I got a full body, deep-tissue massage under general anesthesia? Doesn’t that sound like a fun experiment for my nervous system? I think it sounds like an excellent idea.