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can a specialist not tell you what's really going on with you ?

Can a specialist not tell you what's wrong with you if they knew what's your condition?
I feel both neurologist that I've seen are hiding something from me, I suspect and I have confirmation from a gp that its related to my nervous system and upon my research it could be genetic disease and will soon get genetic testing done .

Even my other gp told me I cant print the medical report or the neurologist conclusion due to the fact it's for his protection as I was trying to get a second opinion.

I mean can they do that refuse to show me a medical opinion what are my rights in this case.
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Avatar universal
Genetic diseases don't exist.  A genetic defect can lead to a disease, but that's only a probability, not a guarantee, and how high the probability you will get that disease because of the defect depends on the defect involved -- some are highly predictive and some are not.  In other words, if you have a disease, it doesn't really matter in most cases if it was caused by a genetic defect or not, you have the disease.  The only time it does matter is when it helps to diagnose a condition, such as a genetic defect that leads to an inability to absorb a particular nutrient, but the treatment won't be to fix your genes, it will still be to treat the condition.  I would think that any medical information about you belongs to both your practitioner and to you, and a law protects your privacy.  But that doesn't necessarily mean there's a written report you can get, but it does mean the doctor has to tell you what your diagnosis is.  If you have a disease and a doctor diagnoses it, he has to tell you that, but in your case, it appears no diagnosis was made.  Neurologists know very little about the nervous system, so it's not unusual they wouldn't be able to diagnose you even if you did have some problem with the nervous system, but again, if they did determine you did, it would be a crime not to tell you because it would be essentially harming you physically on purpose.  But if you want to know what the law is in your state, and what your rights are, you will have to consult a lawyer who specializes in such things, or you might ask your insurance company what your rights are -- they are not easy to pry info from either but sometimes you get lucky.  But again, apparently you were told what the medical opinion was, so what exactly is it you want more than that?  If you don't trust the results, see a different doctor.  But you already did that and he apparently confirmed the first doc.  Whatever it is you think you have, a neurologist might have been the wrong professional to see.  It might be something else.  If it's a mental illness, that isn't really what neurologists do.  That's what psychiatrists and psychologists do.  I'm just saying, even if you do have a right to see a written opinion assuming there is one, it would match the verbal opinion already given to you, so you would still be where you are, unless you were given some invasive or diagnostic tests in which case you should have been given a report from the lab.  
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I don't have a mental illness if that's what your implying and your wrong  A neurologist is a specialist physician who diagnoses and treats conditions of the brain, spinal cord and nerves.
A GP cant diagnose you with epilepsy it has to be from a neurologist and both were as dumb as the other the gp who told me I have epilepsy is the only one with brains .
I'm going to take genetic testing because both neurologist dont know what's causing these symptoms and can't give me a diagnosis hence why I want to do the test because no one is giving me answers .
I need to know what's going on with my body .
If there wasn't something to hide why wouldn't I be allowed to view both reports from different neurologist and why have both not bothered to send the reports through so I have a copy doesn't make sense to me.
I don't believe I have epilepsy I think its something else .

I mentioned mental health because, first, you didn't say what it is you think is wrong with you, and second, you sound like someone who is suffering some mental distress, even more so with your second response.  You are incredibly angry and argumentative, which might mean you're right and you got some bad treatment but which is also a sign of mental distress.  I can't know what's going on with you, I'm not there and I'm not a doctor, but your understanding of medical treatment doesn't sound as much deep as it does very frustrated, which, again, if docs have told you there's nothing medically wrong with you they can find and they are good and thorough doctors, then again, it might be something emotional going on at a time when due to covid a lot of people who were fine are not fine anymore.  I'm probably a good deal older than you and I have never received a written report of an exam from a doctor unless it involved lab tests.  What they do is tell you verbally the diagnosis.  If the diagnosis is that you don't have anything that they can find, there isn't anything written to show you unless they are lying, what is what you are implying, and they have no reason to lie to you.  In fact, the only reason they would have to lie is if they thought there was nothing wrong with you but told you there was in order to give you treatment you didn't need in order to make more money off of you, but that's not what happened.  You are now indulging in your own conspiracy theories here.  And as I said, what is you think genetic testing will tell you?  As is said, even if it shows some defect that doesn't translate to a problem, it only indicates a predilection, and how probable that is depends on the defect.  You seem to be suggesting you have epilepsy, but up to now you haven't said what it is you were being tested for, just that your docs are lying to you.  If someone else saw several doctors including two specialists and concluded the docs were lying, what would you think about that person?  Sometimes it's important to be able to step outside yourself and look at the situation more objectively.  I have told you if you want to see any written reports that might exist you need to consult someone who knows the law in your state and federal laws, not post something on the internet where we don't know that.  That will cost you money and not gain you anything because it will undoubtedly reflect what you were verbally told.  If they had found something to be concerned about then they would have called you in for extensive testing and those tests would have written conclusions and analysis you probably would have seen.  Now, you say you don't believe you have epilepsy, that it's something else, but you don't say what your symptoms are.  Also again, you might have seen a neurologist for something they don't do.  You have a belief that neurologists actually know a lot about the brain and the nervous system, but that isn't actually true.  They know some, but these areas are so complex the science is in its infancy and there's a ton we don't understand.  So here's my take:  you are very angry and conspiratorial, which suggests your mood isn't the best right now.  You believe three doctors are lying to you, which also indicates your mood isn't the best right now.  It's one thing to know that doctors aren't that great at what they do, which is true because we really don't understand our health as much as docs want us to believe, but quite another to think they are lying to us in order to harm us.  That's a crime.  You believe a genetic test will tell you something it doesn't unless you have reason to believe you have certain conditions caused by genetic defects, and you haven't said what it is that's going on.  The fact the one doctor among 4 who agreed with you is the only one with "brains" also indicates a lot of anger which is a mood problem.  Clearly, you are not feeling well in some unstated way, and clearly you are in a lot of distress that has you thinking conspiratorially.  Maybe you're right.  Most likely you're not.  So I also said, when you're not happy with your docs. find better docs.  That's why so many go to the Mayo Clinic and John's Hopkins, a reputation for more thorough docs.  I hope you find your answers.  Peace.  
I'm not in any mental distress dispite what I've been through during these 8 months and I'm actually not bothered by this whole pandemic I have a relaxed approach about life and death , dying isn't scary for me .
Of course I'm angry no one knows what's wrong with me or can give me an answer and I'm also angry that a neurologist keeps saying my symptoms are due to trauma especially domestic violence and sexual abuse when I've never had that trauma In my life !!! and then he had the nerve to say some people dont wanna tell there doctors what's really going on .

I don't have depression or any mental disorder and as far as I'm concerned being angry at your situation doesn't mean you have a mental illness or disorder Emotions are healthy.
You want to know my symptoms seizures, blurred vision, involuntary head , arms, legs, face, eye movements, slurred speech, fatigue, paralysis upper body and lower body , trouble breathing, pauses in breathing, leg weakness and falling down, odd posture movements while standing up.

I say they are hiding something because during my examination he said everything is normal but how is me doing the heel to toe walk and me not able to keep my balance and my body going in odd angles normal how is me opening my mouth and moving my eyes causes these head seizures to happen normal!!!.
When  I do these tests at home especially the heel to toe test I literally fall down .
A normal examination is when None of these happen I had my mum and brother do the exact movements and no movements happened they could walk straight no falling down.
The first neurologist said I have non-epileptic movement but didn't send his diagnosis report to my gp and still hasn't and that was 4 months ago .
The second neurologist said he agrees with the other neurologist but because I have explained to him that it can't be because I have no trauma to cause this he said he can't give me a diagnosis because he doesn't know what's causing this and doesn't agree with the gp that its epilepsy.

I know it's a nervous system issue based on my own experimentation with my body and I have  confirmed with my gp he said yes it's a nervous system/ muscle issue but he can't help me much he said theres nothing he can do for me which I know because once you're nerves a stuffed that's it .

genetic testing can help with a diagnosis and since I know what testing I should get I think I should get it done  and to be honest I don't need to explain to you why I'm getting it done I'm paying for it not you .

and just so you know having seizures can make you moody not everything is caused by a mental illness.
649848 tn?1534633700
A GP “can” diagnose one with epilepsy and they can also treat epilepsy, however it’s better to have a neuro confirm the diagnosis.  Paxiled is right though - there is a lot that’s not known about the brain and nervous system.  I’ve known people to be diagnosed with epilepsy when that’s not what they had and I’ve known people who had epilepsy and didn’t get the proper diagnosis/treatment.

It sounds like you might have been diagnosed with epilepsy by one doctor but maybe others, either won’t confirm the diagnosis so you can get treatment or you don’t think that’s an accurate diagnosis and are looking for something different.

Like Paxiled, I sense a lot of anger and/or frustration. I can identify with that because I’m not real crazy about doctors, myself. If you don’t trust the doctors you have, it would be a good idea to find one you do trust.

It’s true that doctors can’t keep reports from you, though they can require you to put requests for them in writing, etc.  That said, very few doctors will give patients a copy of their “office notes” which are different from actual test reports and contain the doctor’s observations.  

They can’t keep a diagnosis from you, if there is one.
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I should also clarify, I didn't say at any time you were mentally ill.  I said you were in mental distress.  I don't and can't make diagnoses.  Only suggestions.  Now that you have listed your symptoms, that could be a ton of different conditions.  It doesn't have to epilepsy.  You're right, it's your business if you want to get a genetic test, even if there's little in them that are helpful for treatment for anything.  It does sound like something is wrong, and from your brief description, it doesn't sound like it's from abuse or trauma and no neurologist is qualified to tell you that anyway, they aren't psychologists or psychiatrists.  I hope you find whatever it is, and do keep looking, but it could be so many things.  I'm no doctor, but just off the top of my head I can think of several possibilities.  I am curious, though -- did the neurologists run any diagnostic tests, such as CT scans or brain MRIs or the like?  I also agree, 4 months is an unconscionable amount of time not to send a report to the referring doctor, but it is up to the referring doctor to follow up.  Again, I hope you figure this out, but I don't think the docs are hiding anything from you, there's no gain in it to do that.  They make money by doing things, not by not doing things, and they chose not to do things, and I can't see what the motivation would be to hide things in a case where they decide not to do anything.  It is that statement that has me concerned about the mental side of things, and I remain concerned.  If you aren't, that's fine.  Peace.  
Avatar universal
In the United States, HIPAA gives patients the right to obtain copies of all of their medical records. However, there are some exceptions, such as psychotherapy notes.
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I do want to note that legal remedies for docs not doing this are very hard to come by.  I was a practicing lawyer when I lost my health insurance because two docs wouldn't release my medical records to insurance companies when they were allowed to deny coverage for pre-existing conditions.  It's sad to say, but doctors are a law unto themselves if they want to be.  It's generally not worth the money or time to mess with it and easier to find different doctors who are better and more amenable to being cooperative.  But I'm guessing the person posting isn't in the US, as she used the word "mum."  
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