One thing I wish I had made clearer in the original post—I’m concerned that I’m communicating with various doctors/practitioners in a way that makes me sound crazy or low-priority, but I also don’t want sound contentious or obnoxious in a way that makes them dismissive.
To your first bullet, yes my PT did suggest laying with rolled up towel on one side of my neck for 30-60 minutes at a time. I have done this, but should be doing it more regularly.
To the second bullet, the neurologist ordered an AP (anteroposterior) and lateral x-rays. It’s hard for me to tell if this are both necessary and sufficient, or if a CT would show more (e.g. looking at the Wikipedia article). The PT saw these and thought they were concerning because of the way my neck was bent when standing straight. The radiologist thought they looked normal. Blood tests performed were basic metabolic panel, vitamin b12, vitamin b6, CBC with auto diff, iron binding panel, ferritin serum/plasma.
Third bullet—I’m not sure what expectations are reasonable. I know, for example, neurologists are in short supply and maybe there’s patients that are in worse situations than me? But I do have a high opinion of both my neurologist and PCP.
Fourth—I would rather no go bankrupt, but if this continues I know it will have an impact on my work performance… but I’d like to spend what resources I have not wisely. I’m thinking “yeah, just see doctors until someone comes up with an answer.” But I’m not sure that’s the most efficient route… but may be the only one available.
It sounds like a place to start is to aim for 100% compliance with the care you’ve already been prescribed. IME, the willingness of practitioners to engage and re-evaluate your treatment depends on their patient’s willingness to demonstrate strong efforts to put their suggestions into practice.
I would also say that even if your docs are good, if they have no actionable recommendations for you, then you have to choose to accept your condition as a medical mystery or to look for someone else. It sounds like in some cases, as with your neurologist, this is the point you’re at. You could ask them if they have further suggestions, and if not, look into another neurologist.
It sounds like you could still work on looking for a nearer term appointment with a TMJ specialist.
Okay, yeah, that’s a really good point. I’m going to go for 100% compliance with whatever advice I get. I’ll put it on my calendar and set a reminder and I’ll make sure they know I’m doing this.
Going to look for another TMJ specialist, and based the other comments here likely an osteopath and orthopedist.
One thing I wish I had made clearer in the original post—I’m concerned that I’m communicating with various doctors/practitioners in a way that makes me sound crazy or low-priority, but I also don’t want sound contentious or obnoxious in a way that makes them dismissive.
To your first bullet, yes my PT did suggest laying with rolled up towel on one side of my neck for 30-60 minutes at a time. I have done this, but should be doing it more regularly.
To the second bullet, the neurologist ordered an AP (anteroposterior) and lateral x-rays. It’s hard for me to tell if this are both necessary and sufficient, or if a CT would show more (e.g. looking at the Wikipedia article). The PT saw these and thought they were concerning because of the way my neck was bent when standing straight. The radiologist thought they looked normal. Blood tests performed were basic metabolic panel, vitamin b12, vitamin b6, CBC with auto diff, iron binding panel, ferritin serum/plasma.
Third bullet—I’m not sure what expectations are reasonable. I know, for example, neurologists are in short supply and maybe there’s patients that are in worse situations than me? But I do have a high opinion of both my neurologist and PCP.
Fourth—I would rather no go bankrupt, but if this continues I know it will have an impact on my work performance… but I’d like to spend what resources I have not wisely. I’m thinking “yeah, just see doctors until someone comes up with an answer.” But I’m not sure that’s the most efficient route… but may be the only one available.
It sounds like a place to start is to aim for 100% compliance with the care you’ve already been prescribed. IME, the willingness of practitioners to engage and re-evaluate your treatment depends on their patient’s willingness to demonstrate strong efforts to put their suggestions into practice.
I would also say that even if your docs are good, if they have no actionable recommendations for you, then you have to choose to accept your condition as a medical mystery or to look for someone else. It sounds like in some cases, as with your neurologist, this is the point you’re at. You could ask them if they have further suggestions, and if not, look into another neurologist.
It sounds like you could still work on looking for a nearer term appointment with a TMJ specialist.
Okay, yeah, that’s a really good point. I’m going to go for 100% compliance with whatever advice I get. I’ll put it on my calendar and set a reminder and I’ll make sure they know I’m doing this.
Going to look for another TMJ specialist, and based the other comments here likely an osteopath and orthopedist.
Good luck!