What do you think a non-specific/"psychogenic" patient should do instead of come to you?

broken.brain.

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I just cancelled the appointment I had made to ask my PCP if there was anything that could be done about my symptoms that I haven't already tried after reading a thread on here where people were complaining about having to deal with nonspecific/psychogenic/unexplainable symptom/dizzy-with-headaches patients. Figured that if that's what doctors feel about patients like me, there was no sense in being an annoyance in the day of a doctor who can't help me anyway. I really don't want to bother anyone or make anyone's job hell; I just want to not struggle to make it through every day if there's any possibility of getting back to that point.

So my question is, if you could tell those patients what you think they should do, what would you tell them? Would it be to essentially give up and leave you and other medical professionals alone?

So, about my situation:

When I was 18, I woke up one day with excruciating pain on the right side of my head, and then I started having shaky hands, dizzy spells, and issues with my balance a few days later. Was in college at the time and had to leave my classes on a few occasions because I was too dizzy to pay attention or do anything other than sit there gripping my desk because it felt like I might fall out of it the second I let go. This went on for another year and a half before I started having cognitive problems as well. I was always a really fast and good writer, and all of a sudden it was taking me about 14 hours to write a 4-page paper for school because I was having the hardest time putting my thoughts into words and remembering basic words that I should know off the top of my head. Couldn't focus for anything either; I pretty much gave up on paying attention in my classes and learned to just teach myself the material out of my books at my own pace at home.

I went to a neurologist. He said there was some "volume shrinkage" on my CT scan and asked if I was ever a heavy drug user. I told him nope, never even been drunk a day in my life, and he said, "Well that's okay, then. Some people just have that." Then he told me to come back in 6 months if I still felt like I had a problem because he had no illness to treat and didn't want to put someone so young on a bunch of medications. I asked my GP if I could see another neurologist, and she sent me to this doctor with the local neurology associates group. He sent me to have an MRI to rule out MS and said that if my MRI came back clear, he'd run further testing to make sure a "structural" problem wasn't being missed, whatever that may mean. Except then when I came back for my followup appointment, he said that my MRI was clear with the exception of one small, non-specific spot that was hardly enough to warrant an MS diagnosis and told me to go to a psychiatrist because I obviously just had a mood disorder. I went to the psychiatrist, was put on Vyvanse, which did nothing aside from make me not be able to sleep for days at a time, so I just kind of gave up on finding a solution for a few years and did my best to ignore my symptoms and auto-pilot through life.

A few days ago, after I had to leave a writing job I had just started because I couldn't keep up with my deadlines due to the cognitive problems and was constantly getting yelled at for not working fast enough, I scheduled an appointment to ask my GP if there were any other avenues I could explore or another neurologist I could see or something. But then as I said, I cancelled the appointment because I don't want to be that "crazy" patient doctors roll their eyes at behind her back. I don't want anything other than to be able to function in life like a normal human being or at least be able to tell people why I'm slower at things -- without a diagnosis, people just think I'm lazy and/or stupid when I take longer than others to complete a task or make dumb mistakes like typing the wrong word in an email.

You may also notice I'm listed as pre-med on here. That's because I was pre-med as an undergrad but then got off that track because I figured how the hell am I supposed to go to med school or be a doctor with all of these problems? I decided a few months ago to go back to school in January and finish up my pre-reqs so I can see if I can do what I wanted to do with my life anyway, especially since according to the doctors I've seen, I don't REALLY have a problem anyway, but I pretty much already know I'm not going to be able to keep up with the coursework and such because I'm too cognitively slow now. We'll see, though.

Anyway, back to my question, what do you think patients like me should do since the place we're supposed to go when we have health problems is to the doctor, but then the doctors don't want to see us and are largely unwilling to even consider that we may really have something wrong that they just can't figure out rather than a psychosomatic disorder? Right now, my plan is to just not go to doctors anymore unless I have an unrelated issue like a throat infection, but is this what I should do? I know patients like us are huge annoyances to you guys; I just hope you realize that it isn't most of our goal to make your jobs miserable.
 
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danielmd06

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Good evening.

I think your post offers an excellent opportunity to try and clarify some basic concepts about communication with patients and with doctors. Maybe all of us can grow a bit here.

Before I go any further, I think it is extremely important for me to state that in the final analysis, I don't believe any physician on these forums can offer you advice that is more sound than to continue the communication and dialogue with your (or another) primary care physician. He or she most certainly intends to help you. I suspect the same is also true for the two neurologists you have already met with, and I would further advise that you continue the process of working on this problem with them (or others). No advice on an internet forum should supersede what is taking place between you and these providers.

I find the fact that you seem polite and respectful so very refreshing. I strongly suspect that you are in no way, shape, or form, a source of any shred of frustration to any of the doctors that you have visited. Not that you should be concerned about that (though basic human consideration is a wonderful thing).

I would urge you to never allow statements made on these boards to influence your decision of whether or not to see a physician. These boards are meant to give doctors a chance to bounce things off of each other, to vent, to learn, and to grow. And for me, that is just the tip of the iceberg. Let me try just one personal example. I have two boys. I love them more dearly than anything beyond my wife. But she and I certainly get frustrated with them from time to time. And that means we complain to each other some. For goodness sakes, this doesn't mean we don't love them. It doesn't mean we don't care. Maybe this is a poor or an inappropriate analogy. Hopefully, you can read through what I am trying to say. So, with regard to any negative comments that you may have read, I humbly suggest that you recall that doctors are human beings, too. Just like firefighters, police, nurses, teachers, and anyone else. We have our good days and our bad days. Some of us are more socially adept than others. No one is perfect. And with all that being said, I would again urge you to continue to keep your appointments and to speak candidly and clearly with all the doctors that you may have. Like any relationship, it is only as good as the lowest common denominator in the line of communication.

No matter what your symptoms are, if you think they are abnormal, I think it is appropriate to tell them to your doctor. I truly cannot safely offer much comment beyond that. It is inappropriate, dangerous, and unprofessional for me to try and pass judgment on any decisions made by doctors who have actually seen you, examined you, and have taken a more detailed history than we can possibly perform over this electronic medium.

Wherever you live, there should be a large, teaching hospital within your state. Perhaps you could discuss with your primary care doctor if a referral to this facility and the specialists there is appropriate?

No matter what you ultimately decide to do, I want to applaud your consideration of others. I would strongly discourage you from avoiding doctors out of concern for being labeled or enduring negative misperceptions. In the end, their job is to try and help you. I daresay it is what the supermajority of doctors want (I have never personally met one who didn't want to help people when all was said and done). And yes, that relationship is a two-way street. If you don't care for the doctors that you have visited, or you disagree with their assessments, you are empowered to always seek out other doctors! There's literally always another physician.

I wish you the very best, and also luck in your future encounters with other healthcare professionals as you and they seek to unravel what this particular ailment might be.
 
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bustbones26

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I just cancelled the appointment I had made to ask my PCP if there was anything that could be done about my symptoms that I haven't already tried after reading a thread on here where people were complaining about having to deal with nonspecific/psychogenic/unexplainable symptom/dizzy-with-headaches patients. Figured that if that's what doctors feel about patients like me, there was no sense in being an annoyance in the day of a doctor who can't help me anyway. I really don't want to bother anyone or make anyone's job hell; I just want to not struggle to make it through every day if there's any possibility of getting back to that point.

So my question is, if you could tell those patients what you think they should do, what would you tell them? Would it be to essentially give up and leave you and other medical professionals alone?

So, about my situation:

When I was 18, I woke up one day with excruciating pain on the right side of my head, and then I started having shaky hands, dizzy spells, and issues with my balance a few days later. Was in college at the time and had to leave my classes on a few occasions because I was too dizzy to pay attention or do anything other than sit there gripping my desk because it felt like I might fall out of it the second I let go. This went on for another year and a half before I started having cognitive problems as well. I was always a really fast and good writer, and all of a sudden it was taking me about 14 hours to write a 4-page paper for school because I was having the hardest time putting my thoughts into words and remembering basic words that I should know off the top of my head. Couldn't focus for anything either; I pretty much gave up on paying attention in my classes and learned to just teach myself the material out of my books at my own pace at home.

I went to a neurologist. He said there was some "volume shrinkage" on my CT scan and asked if I was ever a heavy drug user. I told him nope, never even been drunk a day in my life, and he said, "Well that's okay, then. Some people just have that." Then he told me to come back in 6 months if I still felt like I had a problem because he had no illness to treat and didn't want to put someone so young on a bunch of medications. I asked my GP if I could see another neurologist, and she sent me to this doctor with the local neurology associates group. He sent me to have an MRI to rule out MS and said that if my MRI came back clear, he'd run further testing to make sure a "structural" problem wasn't being missed, whatever that may mean. Except then when I came back for my followup appointment, he said that my MRI was clear with the exception of one small, non-specific spot that was hardly enough to warrant an MS diagnosis and told me to go to a psychiatrist because I obviously just had a mood disorder. I went to the psychiatrist, was put on Vyvanse, which did nothing aside from make me not be able to sleep for days at a time, so I just kind of gave up on finding a solution for a few years and did my best to ignore my symptoms and auto-pilot through life.

A few days ago, after I had to leave a writing job I had just started because I couldn't keep up with my deadlines due to the cognitive problems and was constantly getting yelled at for not working fast enough, I scheduled an appointment to ask my GP if there were any other avenues I could explore or another neurologist I could see or something. But then as I said, I cancelled the appointment because I don't want to be that "crazy" patient doctors roll their eyes at behind her back. I don't want anything other than to be able to function in life like a normal human being or at least be able to tell people why I'm slower at things -- without a diagnosis, people just think I'm lazy and/or stupid when I take longer than others to complete a task or make dumb mistakes like typing the wrong word in an email.

You may also notice I'm listed as pre-med on here. That's because I was pre-med as an undergrad but then got off that track because I figured how the hell am I supposed to go to med school or be a doctor with all of these problems? I decided a few months ago to go back to school in January and finish up my pre-reqs so I can see if I can do what I wanted to do with my life anyway, especially since according to the doctors I've seen, I don't REALLY have a problem anyway, but I pretty much already know I'm not going to be able to keep up with the coursework and such because I'm too cognitively slow now. We'll see, though.

Anyway, back to my question, what do you think patients like me should do since the place we're supposed to go when we have health problems is to the doctor, but then the doctors don't want to see us and are largely unwilling to even consider that we may really have something wrong that they just can't figure out rather than a psychosomatic disorder? Right now, my plan is to just not go to doctors anymore unless I have an unrelated issue like a throat infection, but is this what I should do? I know patients like us are huge annoyances to you guys; I just hope you realize that it isn't most of our goal to make your jobs miserable.
Okay, now that you have that off your chest, I think most would inform you that seeking medical avise here is not a good idea in general.

I see numerous, and I do mean numerous patients that fit your description. The ONLY way to determine if these patients are truly psychosomatic, have an organic illness, or a combination thereof (which is difficult), is to get through a detailed structured interview and exam. Period!! Sorry, that is probably not what you want to hear, but here would be my advise:

1. Whenever you approach a physician, allow him/her to obtain a detailed interview, stay on topic, do not side track or deviate.

2. Accept that some of your symptoms may not be neurological. The "complaining" that you see on this forum is not in regards to patients. Most of us really do want to help. Its simply because physicians love to dump complex patients merely out of frustration. Some of my collegues joke that the real reason neurologists are consulted is so that somebody can do a good history and physical.

3. Do you know anybody with similar complaints to yours? Who did they see? Who would they recommend? DO NOT go by online reviews!! For example, a pain provider that has a poor rating on ratemds.com of, "he refused to treat my pain", really means he would not prescribe me a bucket load of Vicodin and I refused all non-narcotic treatments. Read between the lines on those types of reviews. Rather, check with your state medical board to see if there are any formal complaints and ask your health insurance if the provider generates satisfaction.

4. Escalate your care. I'm in private practice, trust me, referrals are much different. Try an academic center neurology clinic.
 
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broken.brain.

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Hello. Thanks for the replies!

I'm glad that you found my post respectful/polite, danielmd06. I try. I don't always succeed. ;P

I certainly was not looking for medical advice outside of a general opinion on what neurologists think patients like me should do if anything since, judging by things I've read on here, they don't want to deal with someone who doesn't have something as obvious as, say, a brain tumor where they can point to an MRI and say, "Found your problem. It's right there." I do know enough about ethics in medicine to know better than to expect someone to diagnose me over the internet or try to get someone to talk critically about doctors I have seen. I was moreso trying to offer some perspective about what these types of cases are like from the other side of the fence -- we, or at least I, don't wake up one day and think, "I'm bored. I think I'll go play difficult neurology patient." I do recognize that doctors are human; I used to/still do want to be one of them, and I wouldn't be concerned about annoying them pointlessly if I didn't see them as human beings. I would hope, at the same time, that they would remember that patients are human as well. Not saying anybody on here doesn't, but I certainly didn't get the impression that a few of the doctors I've seen during this ordeal did.

I do agree that a patient/doctor relationship isn't going to be very strong or productive without adequate communication. Unfortunately, in my experience, it's pretty difficult to establish communication because doctor's appointments are so dang short. I know that's not the doctors' faults; it just sucks for everybody. For instance, a large part of why I stopped seeing my first neurologist was that I always felt rushed out of the room. I have symptoms he never even knew about because he would cut me off before I had a chance to finish explaining the situation. Now I realize that this is pretty common. I didn't know that at the time because I had limited experience with doctors, so my line of thinking was, "No wonder he has no clue what's wrong with me. He won't even listen to me for more than 15 seconds at a time. I'll find somebody else who will." Anyway, I know there's nothing anyone can do about short office visits, but I do try to explain the situation clearly. My attempts at openly communicating almost seem to backfire on me sometimes, though, because it's as if doctors sometimes assume that since I'm high functioning enough to speak clearly enough, I can't possibly struggle in other areas of life.

I'll see about asking to see someone at a teaching hospital if the care I would get there might be different than the care I get at clinics. I didn't know that there was any difference, nor did I know there was a difference with private practice. I guess I'm just really unaware of how the process of seeing a specialist works. I thought the only way I could see a specialist was to get a referral.

I do know a few other people with similar complaints, but they've all either got actual diagnoses like Lupus or MS, or they've given up on seeing medical doctors and now go to alternative practitioners like chiropractors and Chinese medicine doctors who give them diagnoses like "Chronic Lyme Disease." I think part of the problem might be my area; I live in a relatively small town with few options in the way of doctors. Most of the neurologists are all in the same practice together. I've had people suggest I see some doctors in Atlanta before, but well, they're in Atlanta (a five-hour drive), have huge patient populations and virtually no availability, and I'm confused on how I'd even arrange to see one of them.

I'll try to do some research and see if I can find any teaching hospitals or an academic neurology clinic to pursue. Thanks again.
 
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broken.brain.

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I did some research, and it looks like there is a teaching hospital in town, but it doesn't have a neurology clinic. The closest thing I guess would be the internal medicine clinic. I suppose I could look into going there.
 

typhoonegator

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This has been a very fruitful discussion and a great thread. Before it gets sidetracked into medical advice or anything more sinister, I'm going to suggest that we leave it at that.

I'll leave it open, but the great eye is always watching ;-)
 

Mattchiavelli

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I think this is proof that medicine (clinical practice at least) is not a science but an art with science and humanity as a substrate

For anyone considering Neurology.... Patients in the united states have an AMAZING range of health literacy and different concepts of what the medical encounter is supposed to result in. Some people go to the doctor expecting a wizard to regenerate them from a 60 year old to a 20 year old and are unreasonable and drive burnout. Some people just want to know if their handful of odd symptoms tie together into something benign or catastrophic. I think the former burns you out but I've seen people make the latter into the former to burn themselves out harder and faster than they should.

Sometimes when I have clinical encounters that test my resolve I like to re-establish (or just establish) what I do as a doctor and what my scope of practice is and isn't. I am in charge of listening to someone's medical story, putting together the pieces, and trying to see if it seems like whats going on in this specific case is something like the many things we've studied, know about, and have evidence about. I have the power of medical science at my beck and call and while it seems magnificent it is also finite. We tend to look at issues in a "is this something that will kill or severely injure someone and at what speed/course" which is the pathology model. A lot of patients come to the clinical encounter from a health and wellness model- they are running at 90% and feel they should be at 100% and doctor whats wrong with me? I've just got to figure this out! This causes a lot of problems because that's not early how the majority of doctors come to the table to practice medicine. There are also many more resources directed at the things that are big scary and deadly and not as much at getting people just tuned up to run at max efficiency.

The problem then becomes one of perspective, which causes more of a breakdown of the doctor-patient relationship. Dr X has seen X, Y and Z kill people in residency and why is Mrs Smith complaining about her headaches because she doesn't have X, Y, or Z? While the patient is thinking "wow, I wish I didn't have this headache 4 days a week because I used to be able to be my daughter's girl scout troop leader before this all came on". The Dr is then thinking "this patient has it easy" and the patient thinks "This Dr is a cold unfeeling etc".

Its kind of sad that modern medicine is squeezing out those little bits of humanity in the medical encounter that in the end could reduce costs and get greater patient satisfaction, since we could get more doctor-patient team type relationships instead of the current ships passing in the night kind of deal....