I have had double Vision in both eyes for the last 15 years -- I was able to tune it out most of the time unless I was tired or someone asked about it --I just excepted after seeing numerous Doctors that was how I was going to see -- I never thought about it getting worse but it has -- the last 3 weeks have been the scariest of my life -- my double vision is now multiple images - whole - not shadowed -- I feel sick every second of everyday -- my eyes feel like they are twisting counter clockwise and they feel like they are fighting with each other to see properly -- it didnt use to be better if I covered one eye -- I would see double from both -- but now if I cover one eye even though it is still double or more it seems a slight bit better as the eyes dont fight to see right -- I am having trouble reading watching TV -- basically functioning at all -- I have better than 20/20 vision and my eyes have been tested and are completely healthy , no cataracts, retina or cornea problems -- I have had an MRI and have no signs of a Tumor or MS --the latest thought is there is something in my brain that is not right -- not merging the images together -- either way I cannot live like this -- it is torture knowing you are going to wake up seeing this way everyday -- I am desperate at this point no one can see this way and not eventually go insane --
The doctor is not blowing you off with his advice. When a person has physical symptoms that, after thorough examination and testing, are found to have no physical cause, the next and most efficient thing to do is find out if there is some psychological technique that can be used to help the brain adapt, either to lessen the symptoms, or, if not, to help the brain learn even more sophisticated ways to adapt to permanent change. Often there is.
I have personal experience with this, and have learned that shrinks know some pretty amazing stuff,
Every case is different, and it will benefit you to have at least one consultation with such a specialist. I think you will be pleasantly surprised.
"When a person has physical symptoms that, after thorough examination and testing, are found to have no physical cause, the next and most efficient thing to do is find out if there is some psychological technique that can be used to help the brain adapt, either to lessen the symptoms, or, if not, to help the brain learn even more sophisticated ways to adapt to permanent change. Often there is."
Well stated and no doubt true--but why do people's doctors so often not SAY this? They usually just make people feel like "go home and forget about it, I don't know what's wrong and I'm not going to make any further attempts to find out," without explaining why, and the patient feels they are being brushed off yet left to deal with the symptoms and the CONSTANT uncertainty and wondering about what is wrong and whether they should continue trying to find out what's wrong. They need thoughtful and MEANINGFUL closure if a case truly is undiagnosable.
Also, how is a patient to know when "thorough examination and testing" have been done? How can patients judge this? Sometimes one doctor misses something or doesn't know something or something slips through the cracks. And VERY OFTEN, patients realize from things their doctor says or does that the doctor HAS NOT BEEN LISTENING to the patient and has got some basic facts of the case WRONG! Now how can you get the diagnosis (or lack thereof) right when you have not been listening to the FACTS of the case?? (I'm not saying that's what happened to the original poster, only that it happens A LOT.)
When you are talking about people's eyesight (or any other important function), people need to know they really HAVE had proper and complete investigations based on the ACTUAL symptoms and history (not the ones the doctor may wrongly assume, as too often happens), and how can the patient be sure of that? At least they need to get a second or even third opinion if they have serious problems.
Also, if the symptoms persist over years and years, or worsen (as apparently they did in the original poster's case), how do you know when and if you should go back for further tests or repeat tests?
Of course there aren't any good answers to these questions, especially difficult in a time of ever more expensive tests and unsustainably rising health care costs. But how does a patient know that their ability to see well (or other kinds of problems), which affects them (perhaps) every minute of every day, isn't being sacrificed by a doctor who isn't very concerned, doesn't have to live their life, and is under pressure to save money? Of course most doctors are conscientious and most are competent, but the nagging questions can persist in patients' minds. "Is there something being missed? Should I keep trying to find out what's wrong, or not?" These questions just do not go away, and not even a great psychiatrist can make them go away, even if (as you say) they can help you adapt and deal with the problems.
You also forgot to say "found to have no DETECTED [or perhaps DETECTABLE] physical cause." Of course the symptoms have a cause. The cause has simply not been found. And maybe never will be, but who's to know for sure?
My best respects to Dr. Hagan, as always. I have no doubt he's one of the good ones with his own patients, not to mention incredibly generous to share his time and knowledge here.
It is the job of the undiagnosed/undiagnosable patient's own doctor to explain the situation in a helpful and positive manner instead of leaving the patient just hanging, as happens far too often (and obviously not just in ophthalmology). It does not cost anything except a few minutes of time--and is probably cost-effective in preventing unnecessary future investigations--to tell such patients--"there are many cases [give a rough percentage?] that we simply cannot diagnose because of limitations in knowledge or technology--here is what we can and cannot do for you--these are the conditions under which you should or shouldn't come back and see us--the important positive points are thus-and-such--we can refer you to a psychologist who can help you adapt to your undiagnosable condition--" Perceptive patients will leave the office feeling much better able to deal with the situation than if simply told "sorry, we can't find anything wrong, don't come back, go see a shrink."
I understand that seeing a psychiatrist may help dealing with this problem if a solution is never found -- what I am asking for and desperately needing is a reason why this happened in the first place -- you dont just start seeing this way and then it get worse -- there is a reason --
Yes, there is a reason. However, the truth is that the cause if your condition may be absolutely unknown right now.. We would like to think that at this stage of civilization,. all is known, but it is not. It is possible that there may be some hints in pure research, but it is equally possible that your condition is so rare that there is no money available for research into it. The big bucks go to common disorders that make a huge impact on national or worldwide health costs. The sad reality is that if a disorder is very, very rare, there will simply not be much motivation to finance research on it.
Most practicing physicians are not researchers. There is not enough time in a day to see patients and be a top flight researcher as well. Docs work from what they learned in school plus what is in the printed literature, and if there is no hard information AND the patient's life is not in danger, then--practically speaking--there is very little choice except to go with a kind of workman's approach; so IF psychological counseling has shown itself somewhat useful in dealing with incurable conditions, that is what a responsible doc must recommend.
You ask interesting questions that deserve answers, but unfortunately the problem is hugely complex. I understand that as a sufferer of probable MS, you are desperately seeking information, hope, and even a cure. You have every reason to feel this way, as does any person whose life is fundamentally changed for the worse. As rational beings, we necessarily look for solutions and absolute reassurance.
However, in this world, there are no absolute answers. None. The best we can do is place our bets the smartest way we can. So how do we do that?
One thing is to consider odds: First, and I think most important, what are the odds that a neurologist or ophthalmologist who has been through extensive training knows less than we do? If we have the idea that our understanding is exactly equal to that of the doc (according to de Tocqueville, a distinctly American trait), then why seek medical advice at all?
However, politeness and sensitivity are separate factors, and if a patient is certain he has been dissed or slighted, the sensible thing IS to seek out the second and third opinions that you mention, because nothing is to be gained by going back to the first doc. However, if after the third or fourth consult, you still have the same answer, then I personally would feel that the odds have finally spoken, and the condition has been fully and completely investigated as far as modern science goes. At that point I--again, personally speaking--would get on with my life in the same way that any person with an incurable or lethal condition does: In general, even those on their way to a predicted death have daily obligations to attend to, not just the matter of making a living while busy dying, but reassuring their children or spouses or even their own parents.
I have watched many friends and relatives struggle with these mortal questions while dealing with everything else (and even had a brush with it myself), and it ultimately comes down again to the matter of odds. In my experience, those who have most successfully handled their conditions are the ones who accepted their several informed diagnoses and moved on.
Thanks for that very thoughtful post. I agree with you completely (except just for the record, I myself never felt "desperate," just confused and hurt and a little scared about my future). At some point you have to say, there just doesn't seem to be an answer, and deal with the symptoms. I have certainly done that fully with my eye problem (no answer to why it happens, but the right glasses now allow me to read comfortably) and my sudden hearing loss (I know that 90 percent of cases remain unexplained and that includes me).
As to the neurological symptoms, I also accepted long ago (after seeing two good neurologists in 2000-2002) that they may be undiagnosable (even IF they had been able to do a successful spinal tap, and even IF I thought the doctors really believed my Lhermitte's and my walking trouble). My third opinion (9 years later) was, I feel, not conclusive because that neurologist was an idiot. (I don't use that word lightly--he truly was--or at least someone who had no interest in his profession--WEIRDEST doctor I ever saw.)
What truly burdens a patient both psychologically and in terms of getting a diagnosis is when doctors lay the psychiatric diagnosis on you, because THAT'S what sticks--REGARDLESS of whether it's justified or not. That tears patients up inside and makes them fear going to the doctor--maybe that's the point? Even 14 years later, unable to walk anymore except around the house or down the block, I am afraid to ask because of past experiences--the lack of direct acknowledgment and addressing of symptoms, being told it's "nothing" or else completely ridiculous things (such as that last weird neurologist telling me that my long period of invariably missing objects when reaching, on the first try at least, was because "maybe you needed new glasses"!?).
Certainly I have moved forward very well with my life, but psychologically I had a great deal of bitterness, huge amounts of time wasted over the years crying and wondering and thinking "What should I do? What should I do?" when given no credible "closure" or meaningful direction from any doctor. My walking distance continues to deteriorate alarmingly, but asking doctors is useless. (I did see a psychologist once, long ago, about the mental distress all this caused me, but she just said, get another opinion!) I know I just have to accept what comes, not try again to seek answers. You know the definition of insanity... trying the same thing over and over and expecting a different result. :)
All in all, your points are very valid and I thank you.
(Just one more clarification, I never thought I knew as much as the doctors, although over the years I've learned a few specific things that some general doctors don't know, as they can't know everything. The main thing I know is my history and symptoms, but those were not always taken into account.)
Sorry for rambling and getting the thread somewhat off-topic... I just felt sorry for this person who obviously has very bad trouble and seems to have recently gotten significantly worse, which would seem to justify another look.
One more correction, I was initially told I had MS, but since then I have always been told essentially (not in so many words, but quite clearly) that I don't. So I am not a case of "probable MS." I am nothing. :) My only diagnosis is sudden hearing loss and "cranial neuropathy."
Having twice suffered sudden hearing loss, I am familiar with your distress over that. Fortunately, mine did respond to large doses of steroids, but these episodes were startling. Unilateral hearing loss is very disorienting.
I am sorry that in all this time you still have not received any satisfactory explanations for your condition, and sorry also that your session with a psychologist was totally unsatisfactory. However, since this occurred years ago, I would like to suggest that you give it another shot, this time with a psychiatrist.
The reason I say this is based on personal experience with several health issues in the last decade or so. I can tell you that a good psychiatrist has serious medical training (in contrast to psychologists) and can talk intelligently with patients about medical issues. After addressing my medical problems, mine sent me to a bright counselor who taught me certain mental tricks to use in dealing with my emotional distress.
I think the newer crop of therapists of this type are of a different stripe educationally. Just as is the case with modern pain clinics, they can indeed offer techniques for dealing with hard stuff. It is not curative, but it can help.
I have a pineal cyst in my brain which is 6mm -- so far anyone I've seen says that would not cause my vision problems but when I look online I find alot of people with pineal cyst having vision problems -- do you think it could?
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