Diagnosis? What diagnosis?

[Matthew74]

I saw a sleep doctor yesterday, the third I have seen. I wanted to get a sleep study done, but no luck. Basically they all told me the same thing, that I need to go to bed earlier and get up earlier. Brilliant.

:sheep::sheep::sheep:

I did my best to explain my problems, but they seem to think I just don't know what I'm talking about. For example, amongst other things I told him that I have huge problems with fatigue and that I have been an irreformable night owl since I was a baby. However, the little surveys he had me fill out seem to have told him that I was neither a morning nor an evening person, and that fatigue was not a major problem. He seemed to believe the surveys! Essentially the doctors are saying it's all my fault, and if I just decide to adjust my hours everything will be fine.

Doctors are always trying to put me in a neat little box where I don't belong. It goes so far that sometimes they even try to get me to say things that aren't true. They will say, "You are telling me such and such." To which I will respond, "That's partly right, and partly wrong." And then they say, "So, you agree that what I said is correct."

I'm beginning to think I expect entirely too much of doctors. How much can this person possibly learn about me in 30 minutes? I have been living with myself 24/7 for 40 years, but they put their trust in the little 10 question worksheet. (Which I suppose makes sense because they know the worksheet better than they know me!) I'm sure they do their best, but results are wanting. I keep hoping that Dr. House is going to show up and figure everything out.

 

[valeriedl]

My sleep schedule is usually get up around 7 and take my meds then fall back asleep shortly after that. I get up for the day around 9:30 then take about a 2 hour nap in the afternoon. I get in bed around 11, read for an hour then go to sleep about midnight. This is how it's always been. Unless I'm very tired I just can't fall asleep any earlier, even if I get up earlier or don't get the nap.

I'm not sure if I've ever had a sleep test done though. Many of the medicines that I'm on cause fatigue which is why I take the nap in the afternoon. I know if I don't get enough sleep I will have a seizure. I usually have to go a few days in a row of not doing my normal sleep schedule to cause one though.

 

[Matthew74]

I too think my problems are due to my meds and seizures, but I really wanted to know what was going on in my sleep to see if there was any problem there. I guess we can't know if we don't look into it, but there is clearly nothing obvious to the doctors at this point. He gave me some direction for adjusting my sleep schedule. I'm going to give it a try, but I'm probably barking up the wrong tree. At the end of them month we are planning on making some adjustments to my meds, hopefully that will improve things a bit.

 

[Matthew74]

I suppose I could look at this as a good thing. I'm sleeping fine, it's just the meds that are the problem!

 

[kirsten]

When doctors look at your situation, they don't just look at the problem you present (fatigue), they look at the whole scenario (epilepsy, medication, odd sleeping hours) and decide from there whether diagnostic tests are needed. Fact of the matter is that your sleep patters are out of whack, you are on drugs that make people sleepy, and you do have a disease that makes people sleepy. I'd say the doc is doing you a favour with his suggestion to find out whether trying out a different sleep pattern will help. It's a good first port of call. If I go to my doc and tell him I'm thirsty all the time, he's going to ask me how much I drink, and if I tell him I drink 200 mg of fluids a day, is it better for him to tell me to try drinking 1.5 litres a day and come back if that doesn't work, or to run a whole expensive series of diagnostic tests that come with their own (albeit small) risks.

I have gotten very annoyed in the past about the way doctors ask questions, in the way you've mentioned here, till I found out why they do it. Some handle the trick better than others, and believe me, I've come across a couple who are shocking at it, but the reason they repeat your statements back and ask the same question in different words over and over is to gauge the truth of the situation. When we report stuff, we're relying on faulty memory (all memory is faulty) and also on subjective experience (can't be any other way.) So docs have these ways of getting an objective, authentic idea of what's going on by asking a lot of the same questions, repeating back to you, repeating that back yet again. It's not that they don't believe us. It's that they know we are human, and these tricks help them to find out what the biggest problems are. It's also a way to tease more information out of us that we might not have thought to include before.

 

[Bidwell]

Matt - I am impressed that the appt was 30 minutes, which is a long time in the world of Sleep Medicine. I am also impressed that he asked you to come back. Something good may come out of it yet! As far as those True/False Surveys -- I have a lot of snippy things to say about those myself. Carry on!

 

[Tez_20]

I saw a sleep doctor yesterday, the third I have seen. I wanted to get a sleep study done, but no luck. Basically they all told me the same thing, that I need to go to bed earlier and get up earlier. Brilliant.

:sheep::sheep::sheep:

I did my best to explain my problems, but they seem to think I just don't know what I'm talking about. For example, amongst other things I told him that I have huge problems with fatigue and that I have been an irreformable night owl since I was a baby. However, the little surveys he had me fill out seem to have told him that I was neither a morning nor an evening person, and that fatigue was not a major problem. He seemed to believe the surveys! Essentially the doctors are saying it's all my fault, and if I just decide to adjust my hours everything will be fine.

Doctors are always trying to put me in a neat little box where I don't belong. It goes so far that sometimes they even try to get me to say things that aren't true. They will say, "You are telling me such and such." To which I will respond, "That's partly right, and partly wrong." And then they say, "So, you agree that what I said is correct."

I'm beginning to think I expect entirely too much of doctors. How much can this person possibly learn about me in 30 minutes? I have been living with myself 24/7 for 40 years, but they put their trust in the little 10 question worksheet. (Which I suppose makes sense because they know the worksheet better than they know me!) I'm sure they do their best, but results are wanting. I keep hoping that Dr. House is going to show up and figure everything out.

Hi Matthew,
I had a sleep test in 97 a good while ago:roflmao: but the brain surgeon really found out how I was reacting and within the last month I had another but had to sleep so many hours and was surposed to be given a sleeping pill which they didn't in the end through counter-reaction and my sleep ended up being a partial seizure.
Having years of seizures like yourself...there's nothing better than being kept totally awake then the test done plus :agree: no doctor can judge a patient or their seizures in 30mins unless it's someone you've been seeing for sometime and knows your results plus history.

Terry

 

[Ruth]

Where I live, all of the doctor's are hooked up by internet. So while I am filling out forms, the doctor is talking to my other doctor's via the internet. It is amazing how much they know about me when they see me.

Plus, they have me get the last MRI, CTscan or whatever they want. I get it for free from the Medical Records Department from my hospital where the test was taken. They are looking at that before they see me.

They are learning about you in other ways besides that short survey.

 

[Matthew74]

Valerie: Thank you for sharing. It's always good to know you are not alone.

Bidwell: All of the doctors at the Mayo have been good at spending time with me in the office.

Kirsten: It did occur to me that by trying to get my schedule adjusted that they were attempting to solve a problem, whereas what I really wanted was to know the answer to a question. Maybe that's one of the issues I have with doctors. Honestly, in my heart I don't really expect them to solve any of my problems. I've gave up on that when I was a kid. I look at the solving the problem bit as an optional surprise bonus. I just want to know what's wrong with me. I can't tell you how gratifying it was when I saw the latest images of my tumor (they were WAAYYY better than any of the others I had seen - fuzzy CT films from the 80s). I'm like, "Ohhhh, so my brains really are scrambled! It's amazing I can think at all!" Then I felt better about the whole thing.

I will keep the interrogation bit in mind next time. Maybe I need to stick to my guns more, and not let them push me around. I'm always afraid of making them mad. Sometimes I try to be explicit and say, "No, it's not that.", but they seem to get offended if I disagree with them. I'm there for their opinion, obviously, so I don't want to tell them they don't know what they are talking about. I know they're not perfect. But, maybe I can't tell the difference between when they are giving me their professional opinion, and when they are "quizzing" me. I could also begin with telling them exactly what I think the problem really is, instead of describing my symptoms and letting them figure it out.

I just wish doctors could act more like normal people. They should read more Plato. I'm thinking something more like this...

Doctor: Greetings, Socrates. So what seems to be the problem?

Socrates: Well Doctor, as you are well aware - since it is the talk of all the town, that I have of late become increasingly irritable.

Doctor: Indeed, it has become known. The fishmonger in particular had something to say about that just this morning.

Socrates: I must sincerely apologize for the incident, not only to Pescadoros, my dear friend, but also to the whole the city, for my wretched behavior.

Doctor: That is well and good, and an admirable admission, but what do you think is the cause of your recent pugnaciousness? After all, for every effect there must naturally be a cause, and such behavior is not in keeping with your character, which is known by all who are in the least acquainted with you as most dignified, and an exemplar of self control. Could it be some motion of the stars, the action of a malevolent god, or perhaps merely something you ate?

Socrates: Hmmm. Clearly this is a matter into which we must inquire further. Tell me, since you are well known for being able to heal even the most desperate cases, where shall we begin? I place myself entirely in your care...

You know, more like that.


Terry: The doctor said that if I could get my schedule straightened out that he might consider a sleep study. He figured that if they did it now, I would be awake most of the time anyhow.

Ruth: You are right. He did look at some of that stuff.

 

[Ruth]

I love your story between the Doctor and Socrates. Especially, when the Doctor says,

or perhaps merely something you ate?

It usually turns out to be the simplest of things. Whereas, they are trying to figure out the most complicated thing wrong with you.

Matthew, that was your point or did I misunderstand?

 

[Matthew74]

Ruth: You understood perfectly. Mostly I was just being funny, but I was suggesting that there should be more dialogue between doctor and patient.

 

[Ruth]

I agree with you, there should be more talk between doctor and patient. The doctor's have it the way they want and there is nothing we can do about it. They think that they are above us, but I agree with you, we live within ourselves for 24/7. We know more about us than they do.

They do not want to admit that fact.

 

[Dolores]

I do understand about needing "more dialogue between doctor and patient". I've been with my GP for 15+ years. We used to have time for lots of dialogue so my doctor got to understand me and my life etc. And I could talk out problems with him. Now because of the number of patients he has to see (thanks to not fixing the broken healthcare system) there is no time for dialogue. Glad I had those early years so that he really knows me.

I'm not saying all doctors are wonderful just that even the good doctors are now under extreme pressure to see more patients limiting the time they can spend with each.

 

[bighealey]

Matthew, I think you are RESISTING A REST plain and simple.

 

[Matthew74]

If only I could get a rest.

 

[Ruth]

Have a cup of Sleepy Time tea and it will relax you. Good night!!