There are a lot of unknowns for anyone replying here:
Your level of compliance with the treatments your doctors have recommended.
The amount of testing your doctors have done.
Your level of trust that your doctors are wise practitioners who are thinking critically about the possible causes of your problem.
The amount of resources you have available to pursue treatment.
In general, I’d focus on spending more time with doctors who have a clear plan of action to at least rule things out. For example, why not get all the imaging done until you can conclusively rule out radiculopathy? I’d also check in with yourself about whether you’re fully complying with the sleep hygiene and anxiety treatments you’ve been prescribed.
If the type of provider who’d be the most logical choice for the issue itself (neurologist) .or for a specific hypothesis about the cause (i.e. a dentist for TMJ), is out of ideas, see another one. Or two. Or three. My dad went through 4 doctors who were going off in all kinds of zany directions, or who were just out of ideas, before he finally found one who diagnosed him with what was in fact obviously scabies. He’d picked it up from a lender mat at a yoga studio.
I have an appointment to see a TMJ specialist but can’t get in to see him until December.
That is a very long time to wait. Have you looked hard for a nearer-term appointment? Try telemedicine if that’s a possibility, or travel to a different city if you must. Don’t spend half a year waiting to start seeing a TMJ specialist when that’s one of your main possibilities and this problem is severely impacting your wellbeing.
I agree with the encouragement to look harder for a sooner TMJ appointment. ADHD testing has similar waits now—looking in May, I was told everyone was booked up till September. But I lucked out, and the first testing doctor I talked to had just had some people cancel appointments, and nobody on his waitlist was responding, so I ended up seeing him a week later, in June, instead of in September. So there are opportunities for luck like this around. And this is without me looking out of state.
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.
There are a lot of unknowns for anyone replying here:
Your level of compliance with the treatments your doctors have recommended.
The amount of testing your doctors have done.
Your level of trust that your doctors are wise practitioners who are thinking critically about the possible causes of your problem.
The amount of resources you have available to pursue treatment.
In general, I’d focus on spending more time with doctors who have a clear plan of action to at least rule things out. For example, why not get all the imaging done until you can conclusively rule out radiculopathy? I’d also check in with yourself about whether you’re fully complying with the sleep hygiene and anxiety treatments you’ve been prescribed.
If the type of provider who’d be the most logical choice for the issue itself (neurologist) .or for a specific hypothesis about the cause (i.e. a dentist for TMJ), is out of ideas, see another one. Or two. Or three. My dad went through 4 doctors who were going off in all kinds of zany directions, or who were just out of ideas, before he finally found one who diagnosed him with what was in fact obviously scabies. He’d picked it up from a lender mat at a yoga studio.
That is a very long time to wait. Have you looked hard for a nearer-term appointment? Try telemedicine if that’s a possibility, or travel to a different city if you must. Don’t spend half a year waiting to start seeing a TMJ specialist when that’s one of your main possibilities and this problem is severely impacting your wellbeing.
I agree with the encouragement to look harder for a sooner TMJ appointment. ADHD testing has similar waits now—looking in May, I was told everyone was booked up till September. But I lucked out, and the first testing doctor I talked to had just had some people cancel appointments, and nobody on his waitlist was responding, so I ended up seeing him a week later, in June, instead of in September. So there are opportunities for luck like this around. And this is without me looking out of state.
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!