Discussions By Condition: I cannot get a diagnosis.

What is wrong with these "Doctors"

Posted In: I cannot get a diagnosis. 19 Replies
  • Posted By: It won't stop me
  • February 20, 2007
  • 08:32 PM

:eek: I have my own problems trying to get a diagnosis. I have had all the symptoms of MS for over a year.Not to mention seven other "Episodes" starting when I was 21, now am 34.
Last Feb,went to great PA who sent me to an ok internist, who sent me to a heartless Neurologist, who said, " I think its just stress. wow..realy? Stress can make me so week that I can hardly walk for weeks? Come on Lady!

Seven months later went to Nuero #2 who said " I think you are having seizures" my response... wow realy? I have been siezures nearly everyday for the last year. Strange, only about 2 of my 50 symptoms match up with that. So I did her EEG and it showed nothing... so I asked for a Lumbar puncture to rule out MS, since nothing showes on MRI either. Her response... " you don't have any of the symptoms of MS. Its like this lady had me "diagnosed" before I have even got to the appointment.

Are you kidding me, I have All of the symptoms of MS and I am so tired of being on a wild goose chase of trying to get a diagnosis. This part is almost more stressfull than being sick.

The big QUESTION, WHy in the world don't doctors listen. I mean why can't they show any empathy or compasion?

Don't they understand that by not listening, they are in fact making people who are already ill, even more sick to the stress the Doc is putting on them. The doctor is in fact, making the patient sicker. Not to mention that with out a diagnosis, treatment can not start either.

I have read thread after thread on here, and all I keep seeing is that they just don't seem to listen. It makes me want to go undercover and run a sting operation on medical America.

Ok, I feel better. Anyone else feel like venting?

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19 Replies:

  • It's not just in America I'm afraid. I read a paper in a medical journal once that showed doctors were less likely to diagnose ME if you said you thought you were suffering from it.To give them there due, they have to look at the facts objectively and let's face it, the vast majority of patients are there only for reassurance. I am sure that is why they often seem so proficient in missing things.That doesn't help your problem though. I hope you get it sorted and that you haven't got MS.
    Anonymous 42789 Replies
    • February 20, 2007
    • 08:51 PM
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  • I totally feel your pain! I was referred to a neurologist because my MRI (1 year ago) showed demyelination, so possibility of MS. The MRI had been ordered because of eye problems (constant "aura" in my right eye - not caused by migrains). I still have the constant, never-ending "aura", so now it's been over 1 year with the "aura"), & my optic nerve was swollen at the time (the swelling has gone down some since). Also, I have huge blind spots where there should be none in my peripheral vision in that eye (you think maybe the "aura" is causing this?!). Neurologist ordered Visual Evoked Response Testing, which I failed (I have DELAYED evoked response, both sides). So far, I have successfully met 2 classic criteria for MS; 3 if you count the eye problem (not to mention on again-off-again fatigue, memory problems, constant tiredness, pins & needles in both feet, & on and on the list goes). These symptoms have been going on for years & getting progressively worse when they hit. Since the MRI reflects demyelination, and I failed the Visual Evoked Response test, Neurologist ordered a lumbar puncture, which came back INCONCLUSIVE. He said results came back as not positive, but not negative either. What kind of mullarkey is that?! He said the memory problems are probably due to MY AGE (at the time, I was an ancient 39!) This coming from a neurologist who is in his mid to late 60's. My mom, who is an RN says that's a load of crap. The neurologist promptly passed me on to his PA and told me to keep a diary of my "symptoms". Why should I? Every symptom that I gave him, he had an answer for: "It's stress, it's the aging process", etc. I truly believe that until I present myself in his office, half-crippled, and/or with my my memory half gone, he will not proceed any further. I feel like he has "dismissed" me. When I have more time, I am going to research Neurologists in my area that specialize in MS. My mom said she saw a Montel Williams episode that had people diagnosed with MS too late, after the OBVIOUS symptoms (one lady, a dancer, was paralyzed, one man, an attorney, had to quit his practice due to extreme memory loss, etc.) Easy for the good doctors to diagnose THEN, right? Please don't give up your research and don't stop until you find a caring, competent doctor who actually LISTENS to you. Good luck, & take care!!!
    Anonymous 42789 Replies
    • February 20, 2007
    • 09:32 PM
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  • Ok, I feel it too! They never listen. They can't stay longer than 5 minutes with you in the room. You mention something and they automatically say 'no'. You worry, they don't. And they think the more patients they get threw the more money they make. Which if you ask me isn't what being a doctor is about. Funny enough, I plan to become a doctor someday. I am only 15 now so....But I have never agreed with most of it. I want to change the medical field. I think being a doctor should be about listening to the patients seeing their views and diagnosing them. If and when I become a doctor I vow "I shall never let a patient leave my office without a diagnosis." I think that is the first mistake. If someone is having problems (symptoms) then obviously something is wrong I mean come on! That's common sense! I deal with doctors a lot because well I am obviously on here to find some help myself. I have had to do my own research instead of my doctors. Because, of course, they said nothing was wrong, or at least they didn't find anything. I mean, have you ever lost your keys and you know they are around somewhere but you can't find them? Well, if you give up or don't look hard enough you will never find them. Right? Well, maybe, you could stumble upon them one day. The same thing with doctors. They NEVER look hard enough. But, sometimes they just run across something wrong and by shear luck they find it out what is wrong. BUT, unlike keys, not finding the diagnosis could lead to death. Which is, well, BAD. So, I have taken it upon myself to want and need to change the medical field for the better. Everything everyone hates about doctors, I don't agree with either. That's why I am going to change it! I am going to be the better person! Doctors should be caring, sympathetic, and, well, loving. And I mean about the patients not about their pay-checks, if you kow what I mean. Not to be offensive to any doctors out there, but some do think that way. I am not about money. I am not going to be a doctor for the money. I am going to be a doctor for the patients... when I think of being a doctor the last thing that comes to mind is the money(if it does come to mind). I think of the patients first. And that is how all doctor should think. Period. Thanks for listening to what I have to say. I apoligize if that was offensive in any way to anyone. And check out my thread "Joint pain...Please Help-wilson_gal22" if you think you could help me...thanks again for reading...Christi
    wilson_gal22 46 Replies
    • February 21, 2007
    • 03:48 AM
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  • What is wrong ? How many reasons do you want ?1. No hearts2. If there is a brain, it is on automatic pilot - most of em think alike3. They are supposed to make the diagnosis, not you. So if you tell them what you think you have, they will automatically ignore or disagree with you4. They either will not or can not use the words "I don't know"5. And in connection to #4, they do not try to find out6. And on and on and on and on............................................ How many stories would you like ?I am a Doctor of Chiropractic and have been since 1989. In my town in 1996, I diagnosed 2 ladies with MS. In both cases, because a chiropractor made the diagnoses (and we do have more health care training in school than MDs do) no local MDs would agree with it, because how could someone who was "only a chiropractor" be right ? Both ladies finally ended up at the famous Cleveland Clinic, and both got an MS diagnosis. With your case, I suggest finding a Lyme literate doctor and getting a Lyme test, NOT from your local hospital, but from the Bowen institute.My current training now makes me feel that MS is actually late stage Lyme. You may also want to reference www.lymenet.org
    Anonymous 42789 Replies
    • February 21, 2007
    • 05:48 AM
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  • With your case, I suggest finding a Lyme literate doctor and getting a Lyme test, NOT from your local hospital, but from the Bowen institute.My current training now makes me feel that MS is actually late stage Lyme. You may also want to reference www.lymenet.org Ok, Ralph, maybe you could help me. If you would please read "Joint Pain...Please Help" started by me "wilson_gal22"....I have had 3 or 4 people say my symptoms sound like Lyme. You seem to know what you are talking about so maybe you could tell me if they could be right. I have read all about it on the site you recommended and it sounds just like me, but Lyme disease can have like 75 symptoms. (According to a survey I took, which had 75.) It said if you have more than 20 of them you are at great potential and should get tested immediatly, I had 22. So, maybe you could help me. Thanks. Christi.
    wilson_gal22 46 Replies
    • February 21, 2007
    • 06:41 AM
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  • I agree about doctors *not* doing their jobs! Read the post on this section entitled \"About illnesses\" - it gives advice saying that people need to research their own illnesses & treatments if they expect to be cured! I think their lack of *real* care is gross (perhaps America should boycott doctors who do this by refusing to pay for substandard care!).Hit them in their wallets I say!
    Anonymous 42789 Replies
    • February 21, 2007
    • 00:07 PM
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  • Christi - the best course of action for you may be to find a Lyme literate doc and get tested. Lyme is becoming known as "the second great imitator", which means it can present itself in many different ways. (Syphilis is the first great imitator, which also produces many different types of symptons) Lyme in many cases seems to really like joints, nervous system and the heart to live in like a "base camp." So get it checked with the Bowen test, which is very accurate. An internet buddy of mine who does have Lyme and was misdiagnosed with Fibromyalgia and CFS emailed me some maps showing the incidence of MS and the incidence of Lyme. The amount of Lyme in eack county in each state and the amount of MS are almost exactly the same. One more thing - if you contact a doc ask to talk to some patients to see what they feel about the doc. If the docs office gives you the "we are not allowed to do that" stuff, ask them to have the patient contact you, if they wish. That is legal.
    Anonymous 42789 Replies
    • February 21, 2007
    • 02:27 PM
    • 0
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  • My biggest problem is that doctors seem to blame everything on stress!! Yes, stress is troublesome, but when it is really minimal in my life, it explains NOTHING, yet it is the first thing they love turn to. Or, they try to tell me I could be depressed! No... pretty sure I am not depressed. It is irritating that a doctor would rather accuse you of being crazy than suck up their pride, put their ego aside, and say "I'm sorry, I just dont know whats wrong." I went to the ER one time because I was so tired I could barely move, my heart felt like it was going to pound out of my chest, and I had a resting pulse of 117. The doctor had the audacity to suggest I see a shrink!! I went to a cardiologist a week later and he diagnosed me with MVP before any tests were run!This is not to say all doctors are bad, because I have found a couple specialists that really listened and tried what they could within their means, but its definately frustrating when you dont feel right and the people who are supposed to help you just dont seem to care. I feel your pain!
    Anonymous 42789 Replies
    • February 21, 2007
    • 02:49 PM
    • 0
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  • I can very much relate... at this point I get so stressed out going to the doctor as I know I will be leaving there in tears... so for me... I have CLASSIC midgut carcinoid tumour symptoms...I have been looking for a diagnosis for years to no avail... and I recently learned of this rare tumour and it is ME...scary.... so I went to my doctor and demanded the urine test... since she had never heard of midgut carcinoid she went to her office and googled it for 40 minutes and then came back with a requisition form because I was so stressed out but she thought it was "totally unnecessary" and that it was most likely IBS.. ***k YOU..22 year olds don't ***t themselves while they sleep. They don't have crazy hot flashes. they don't have a massive lump in their stomach. I told my doctor that the next dr who says to me its IBS is going to get kicked in the shins because it is NOT and I am slowly dying until someone gets their ***t together and helps me figure this out. One ******e even diagnosed me with laxative abuse and paranoid personality disorder.
    prettyprettypumpkin 47 Replies
    • February 21, 2007
    • 02:57 PM
    • 0
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  • I am sorry you all are having such problems with your doctors. I had to write a post to this for I work in a family practice clinic for one doctor and FNP. We DO care. First of all, it seems going from doctor to doctor you are losing yourself among the field. Find you ONE doctor you can talk to, keep returning to him.....if he refers you to a specialist, have that specialist send the reports back to that referring doctor you first went to. Then make appt to see him and talk about what the specialist said and how unhappy you are and do not understand what he said. As for inconclusive test, a doctor can only go by what a test does tells them....thats why it is sent off.....to get a DX. If it shows inconclusive, then they are also at a loss also and can not help it either. Don't blame him at least he is trying by sending off for testing. Just keep going back, have your symptoms listed as you were told to, that is often asked of a patient for it is a good guide to help better. A person may have symptoms of a disease but if the test says negative how can they say ok, you have it? They can't give you a Dx you want just by symptoms when the test tells them no...it just isn't possible. We have patients all time that come in for treatment, and we don't hear from them again. We have to assume then that the treatment worked or the symptoms disappeared since they did not return. So GO BACK to the original doctor you find that you trust and like and stick with one with all the reports going to him. I would recommend an internal medicine physician.
    agypsygrl 79 Replies
    • February 21, 2007
    • 03:19 PM
    • 0
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  • Although you may care, and I'm sure there ARE many doctors out there that do care, please do not discount the frustrating experiences of those of us who actually have doctors that DON'T care. I come from a family wherein my mother is an RN, my sister is an RN, my aunt and 3 uncles are RN's and my mom's cousin is a doctor - family practice (all on my mom's side!) And based on some of their stories that they have told throughout the years, there are MANY doctors (as well as nurses) that absolutely DON'T give a crap about anything more than $$. I know my doctor does not care. Anyone who has researched MS knows that MS has such a myriad of symptoms. Therefore, when you give the doctor all of your symptoms, as I have, and he dismisses EACH & EVERY ONE of them, stating "oh, that's just stress", or "that's just age", etc., it makes no sense to continue keeping a diary for him so he can just continue to dismiss your symptoms and collect your copays. My MRI reflects demyelination, I failed the Visual Evoked response test, & the lumbar puncture (CSF) came back as neither positive nor negative; ie inconclusive, and I have many of the physical symptoms that my doctor keeps dismissing as possibly due to stress or age! Here are the criteria for a diagnosis of MS (from the National MS Society website) besides physical symptoms: "Other Tests Also Needed: An abnormal autoimmune response in CSF is found in a number of other diseases, so the test is NOT SPECIFIC for MS. (caps are mine). Conversely, some 5-10% of patients with MS never show these CSF (lumbar puncture) abnormalities! (exclamation point is mine). Therefore, CSF (lumbar puncture) analysis by itself cannot confirm or rule out a diagnosis of MS. It must be part of the total clinical picture that takes into account other diagnostic procedures such as evoked potentials and magnetic resonance imaging (MRI)". Notice, my MRI denotes demyelination, which is one criteria, my evoked potentials (Visual Evoked Response) are abnormal; came back as delayed, which is yet another critera. Last, but not least, physical symptoms, which I do have. Yet my doctor is basing his theory on the lumbar puncture alone! I have located another neurologist, this time an MS SPECIALIST (which my current neurologist is not) in Jacksonville and will be transferring all of my records, including the actual MRI films & report to him. Also, if not MS, fine - that's great! Do you think I WANT to have MS? Of course not! But to my current doctor I say... don't tell me nothing is wrong when my MRI is abnormal and I failed the Visual Evoked Response test, plus I have physical symptoms. That's just crazy. Just keep on writing in my diary so you can keep dismissing my symptoms while you collect the copays & coinsurance, not to mention I have to take valuable time off of work! I have decided to keep a diary, but it will be for the new neurologist, not my current doctor. Believe me, I don't want to be diagnosed with MS. I don't WANT to be sick. But since I am, I need a doctor who cares about actually wanting to find out what is wrong with me, not just say nothing's wrong just because he can't figure it out and is too proud to admit it. BTW, just a side note...today I actually took the time to look my current doctor up on MyFlorida.com, to see if he's had any malpractice suits, and sure enough....settled a suit a couple of years ago for $200,000. From now on, I'm looking all my docs up.
    Anonymous 42789 Replies
    • February 22, 2007
    • 04:00 AM
    • 0
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  • Although you may care, and I'm sure there ARE many doctors out there that do care, please do not discount the frustrating experiences of those of us who actually have doctors that DON'T care. I come from a family wherein my mother is an RN, my sister is an RN, my aunt and 3 uncles are RN's and my mom's cousin is a doctor - family practice (all on my mom's side!) And based on some of their stories that they have told throughout the years, there are MANY doctors (as well as nurses) that absolutely DON'T give a crap about anything more than $$. I know my doctor does not care. Anyone who has researched MS knows that MS has such a myriad of symptoms. Therefore, when you give the doctor all of your symptoms, as I have, and he dismisses EACH & EVERY ONE of them, stating "oh, that's just stress", or "that's just age", etc., it makes no sense to continue keeping a diary for him so he can just continue to dismiss your symptoms and collect your copays. My MRI reflects demyelination, I failed the Visual Evoked response test, & the lumbar puncture (CSF) came back as neither positive nor negative; ie inconclusive, and I have many of the physical symptoms that my doctor keeps dismissing as possibly due to stress or age! Here are the criteria for a diagnosis of MS (from the National MS Society website) besides physical symptoms: Other Tests Also Needed: An abnormal autoimmune response in CSF is found in a number of other diseases, so the test is NOT SPECIFIC for MS. (caps are mine). Conversely, some 5-10% of patients with MS never show these CSF (lumbar puncture) abnormalities! (exclamation point is mine). Therefore, CSF (lumbar puncture) analysis by itself cannot confirm or rule out a diagnosis of MS. It must be part of the total clinical picture that takes into account other diagnostic procedures such as evoked potentials and magnetic resonance imaging (MRI). Notice, my MRI denotes demyelination, which is one criteria, my evoked potentials (Visual Evoked Response) are abnormal; came back as delayed, which is yet another critera. Last, but not least, physical symptoms, which I do have. Yet my doctor is basing his theory on the lumbar puncture alone! I have located another neurologist, this time an MS SPECIALIST (which my current neurologist is not) in Jacksonville and will be transferring all of my records, including the actual MRI films & report to him. Also, if not MS, fine - that's great! Do you think I WANT to have MS? Of course not! But to my current doctor I say... don't tell me nothing is wrong when my MRI is abnormal and I failed the Visual Evoked Response test, plus I have physical symptoms. That's just crazy. Just keep on writing in my diary so you can keep dismissing my symptoms while you collect the copays & coinsurance, not to mention I have to take valuable time off of work! I have decided to keep a diary, but it will be for the new neurologist, not my current doctor. Believe me, I don't want to be diagnosed with MS. I don't WANT to be sick. But since I am, I need a doctor who cares about actually wanting to find out what is wrong with me, not just say nothing's wrong just because he can't figure it out and is too proud to admit it. BTW, just a side note...today I actually took the time to look my current doctor up on MyFlorida.com, to see if he's had any malpractice suits, and sure enough....settled a suit a couple of years ago for $200,000. From now on, I'm looking all my docs up.
    Anonymous 42789 Replies
    • February 22, 2007
    • 04:11 AM
    • 0
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  • That is why I did mention to yes, find you a doctor that will listen to you..write that stuff down and don't leave till you get your answers...You did the right thing.....I would have left him also so good for you and the best of luck in finding the help you need. Thank goodness that I do have one of the good ones and he refers patients when he is stumped and doesn't just pass them off. I had the same experience at a IMA clinic, my first appt was with an older doctor and I told him I was just not "right", tired, hair loss, etc...anyway, he just did a followup hemorgram and said it was ok......This past Wed I went back to the same IMA clinic and finally found a doctor that won't let anything to chance. So I do understand where you all were coming from, but IF you trust your doctor stick with him......IF you don't.......move on, you deserve it.
    agypsygrl 79 Replies
    • February 27, 2007
    • 02:38 AM
    • 0
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  • Doctors attend medical school for years....you can only become familiar with symptomotology if one has experienced patients coming to you over the years. They have medical books to refer to, but do they take the time to look at them...a doctor should not work alone...he/she should have a partner to "bounce" information off of...They are loners and think they know it all...That is not the case! Two or more heads are better than one and they do not bother to consult their colleagues about some baffling symptom that a patient has...they have a vast amount of patients and they do not seem to care as long as they are getting their MONEY! They should be held accountable for nonchantness!!! They experiment with giving out medication that sometimes causes CANCER and they will not divulge that to the patient...the next thing you know the patient has CANCER from the medication that was prescribed....It is a fact that things like this happen and nothing is done.
    Anonymous 42789 Replies Flag this Response
  • Great Post!! It seems all I ever get is the docs that do all the nasty stuff and leave the patient hung out to dry. Especially if your a woman and you keep getting told theres nothing wrong, "its all in your head!!" Took me 20 yrs to finally get the right dx , Lyme disease, when my whole state is crawling with it!! I think these docs should be made to take refresher courses as some of them are still going by what they learned in med school 20-30 yrs ago. One month of abx is not going to cure a 20 yr old case of Lyme, but they still think it will. And don't dare mention you read something in a book, or on line, they abt escort you out the door. They don't seem to get, the info is from other well established doc's research. Trying to get referrals out of some is like trying to pull hen's teeth. Thanks for letting me chime in on the dr's vent. Hope we can all find a good one soon!! Have a good day....~~~Dee
    Anonymous 42789 Replies Flag this Response
  • wow, wish you all lived down here and saw my doctor, sounds like you need him!! I really think I have found the perfect place and won't ever move if this is what you all have dealt with.We had a patient come in, she had developed weakness in her toes, then moved into her legs and could barely walk without her husb helping her, my doc did all blood work but he said this is just not right...he referred her and then that specialist called in 2 more to all get what was going on....this all happened in 3 days time and she is home and improving.I lived in Bloomington IN for almost a year, kept having breathing problems...went to an internal medicine doctor and he had me see a pulmonologist, cardiologist then he got all the reports and fixed my problem.....all in one week.Guess I can call myself lucky huh? But then, after working 24 years around the doctor I work for I see behind closed doors just how worried he gets over a patient and how he does read all his medical journals at nights and attends cme courses all year long, plus dinner cme meetings just to learn more about whats going on out there.Ask your doctor next time if he does cme courses. Good Luck on your health and venting does relieve stress.
    agypsygrl 79 Replies Flag this Response
  • did your doctor just love your insurance or the fact that you are wealthy? doctors wont treat you if you are poor or lack insurance. don't brag about your experience.
    Anonymous 42789 Replies Flag this Response
  • I have seen doctors care deteriorate over the last decade. It's an epidemic, most of them suck.....
    Anonymous 42789 Replies Flag this Response
  • ...I am only 15 now so....I want to change the medical field. I think being a doctor should be about listening to the patients seeing their views and diagnosing them. If and when I become a doctor I vow "I shall never let a patient leave my office without a diagnosis."...ChristiChristi, you sound like a smart, compassionate person who will do a world of good. I would love to have a doctor with your attitude. Be a doctor, you will be wonderful at it! Best of luck, Katie
    Anonymous 42789 Replies Flag this Response
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