Recently someone challenged me that people aren't dismissed, disdained, discarded or humiliated by neurologists as often as I seem to imply. How many of you (with a brief description) have come away from a doctor visit angry, in tears, feeling humilated, or feeling ignored? How many of you have had doctors imply that your symptoms were insignificant or stress-related or imagined?
After the second year that my first "evil" neuro dismissed me as "okay", despite worsening spasticity and then had the gall to suggest that all I wanted was to get medical testing as an attention-seeker (specifically the LP) - I swore that no matter what happen to me, I was never going to risk that with another docotr and cancelled all further appointments. See my Journal entry.
I would just like to see a showing of posts on who has been treated this way.
Recently, since all the tests have come back negative for MS and he doesn't believe in lyme disease in OK, I am now starting to get "those comments" like:
Lets see...are you making this up??? Well,,,,you aren't really that "type". When he called w/my negative LP results he threw in there "I sure WISH you were just cooking all this up"
I KNOW where this is headed and luckily I don't really need him anymore!
Yeah, people really WANT the LP for attention- How Ridiculous!!(it took him 3 tries on me and my back is still sore!)
Bottom line: They start throwing this **** out there when THEY have no other answer for you! As far as I am concerned you can count me in on this one.
To those that don't know, I am a limbo lander still, but now have been to a neuro who is fairly certain that what I have is MS. He has sent me on now to a new MS specialist and I am awaiting further testing.
My first neuro was a nimrod nimcompoop who it seems had an ego bigger than his brain. Because of an issue with another fellow neuro who mentioned possible MS to me without his say so, he seemed to go out of his way to say it wasn't. My 2 MRIs that he had done in 2 years were both without contrast. Even though my first was with my spine and there seemed to be a spot of uncertainty, my next MRI did not include the spine.My brain he said had 3 UBOs. No other testing was done other then an EEG which came back normal. He never did any in office testing on me at any time and left me with probably not MS. Dismissed and discarded.
When I lost my ability to speak normal last August, I ended up at a local hospital where the neuro there claimed that I had a mental disorder and should see a psychiatrist.Humiliated and disdained. He did a 5 minute in office test and said that there was nothing wrong with me even though the doc on call that I saw at first said that I had weakness in my legs, my right hand and had notable dysatharia as well as extreme left leg tremors. This neuro claimed that the upcoming MRI that the ER doc ordered would not show anything. Well it did, I went from having 3 lesions to 8 lesions.
I did not go to anybody after this as I was so tired and fed up by then. I was finished with these boneheads that couldn't give a rat's patooti about what is wrong with me. I had not only one who dismissed me but two. I shudder to think how low I felt after that and the tears that I shed.
Thank goodness for this forum who helped me find my fight again and with the help of a stranger, got into a new neuro who has took me seriously.
I was dismissed and treated like an interrogation by a neuro near my home, as well as one @ CCF. Both declared that the clear MRI done extremely early in this journey being clean meant that I absolutely could not possibly have MS, and that at the time being 41 meant I was too old to possibly have MS. At least I was never accused of being neurotic or anything of that like. I was dismissed to rheumy and endocrinology, who both declared that this is neurological not their specialty. Also sent to rule out seizures. Been temporarily dx'd with migraine assoc vertigo and parkinson's associated dyskinesia. I did see a 3rd neuro, whose first question was "have you always been fat?" - that was also her last. Tried to see 2 who would not even see me without being already Dx'd.
Now I hold out hope for this new neuro - I know good ones exist.
I've had a neuro tell me that my problem was half real and half "conversion disorder." I've since then had another neuro who assured me that there isn't a chance in hell that it's conversion disorder (which I intellectually knew), but that first one temporarily undermined my considerable confidence with that assertion. Yes, I felt dismissed, disdained, and humiliated by that experience. Absolutely. And I didn't go back.
And I could list here several other people among my acquaintance who have had similarly dismissive and humiliating experiences with their neurologists--not even the same doctors among them. In fact, I just talked to one woman today who's hesitant to call her neuro about the side effects of her medication because she thinks her neuro will be mad at her and dismiss her concerns, that having been this particular neuro's M.O. from the beginning.
When I first developed ON my eye doctor did and eye exam and kind of patted me on the head saying it was just aging.
A week later I called him back and told him I was getting worse. He brought me back in and told me he now thought it was ON, but lets wait a few weeks to see if it gets better. If you were "younger" I'd worry about MS (I had just turned 44 at the time)
I finally got him to send me to a specialist. ON was confirmed. I had an abnormal MRI.
The first Neurologist I saw told me the spots on my MRI were from high BP. She would not even address my other issues. I am not a small flower. This doctor was a very tiny petite woman and not much bigger around than my leg but boy did I feel small walking out of her office.
I decided to find another doctor because I was not getting better and my PCP was not happy with the first neuros assessment.
The next neuro tried to blame my problems on me being " a good parent". Ok, but I have ON and spots on my MRI. At that point my PCP was really pushing me to get to a MS doctor. But my insurance did not cover. This all happen last year.
Just after the first of this year I developed ON again after having been really sick at Christmas. We had new insurance and my PCP sent me directly to the MS clinic. I was dx'd the first time I saw the MS doctor. She was horrified at the fact I'd been put off and not started on DMD's.
My story is very simple and moved very quickly compared to what many others are subjected to. If it had not been for my PCP I may have accepted I am a "good but over stressed parent". I am one of the lucky ones.
I'm so glad that you started this thread. It will be hard for me, but I will try to be brief. I have seen a total of 8 neuros!!! No, I am not a doctor shopper, or a difficult patient. I'm quite pleasant, perhaps too pleasant.
Neuro 1 said sx sure sounded like MS did an LP when it came back negative he had his receptionist call me with the results. No follow up appointment was offered. I had one lesion done on an open MRI from an ER trip. This neuro didn't offer any other testing besides the LP.
Neuro 2 He made me feel as if he was going to help me. He ordered another Brain MRI, and C and T spine MRI's. His nurse told me my MRI showed "mild subcortical white matter disease". I had a rushed follow up which turned out to be his last apt of the day. He just did an EMG and Nerve conduction test...those were normal. I told him about my extreme fatigue (not even one of my worst sx) he then said I must have CFS.
Neuro 3. I saw a female doctor who did a very brief (maybe 5 minute) exam. She had me breath real heavily, then asked if I had any tingling. I said yes my mouth tingled (wouldn't most people if they were hyperventilating?). So, she said I had anxiety and depression and she sent a letter to my PCP saying I needed to be on AD. She wouldn't let me explain that my sx were different.
Neuro 4. Also acted as if he'd help me. They always seemed to be more interested at that first visit. He ordered another series of MRI's and redid the EMG...all of them were normal. At my second visit he was very patronizing. His whole demeanor had changed. My eye had been closing forcefully, which was out of my control. My eye doctor said it was a neurological problem she sent him a letter regarding it. One of the tests she did was to have me look up (it's a test for MG) whenever I did that my eye would close. I made the mistake of showing this neuro that and he thought I was doing it on purpose. He wrote in his notes that it was psychogenic because when he talked (distracted) me I didn't do it. He didn't understand what I was trying to show him.
Anyway the letter from the eye doctor made him sit up and take notice. He sent me to a Neuro muscular disease neuro. Before I got in to see this neuro though I had an episode of bed wetting and bowel incontinence. When I called his office the nurse said he couldn't see me since he'd already referred me somewhere else.????? This guy was local the new guy was three hours away.
Neuro 5. Very nice. Said not NMD sounds like MS to him. Said it just might not be showing up on tests yet. Unfortunately, he couldn't see me again because he only sees NMD patients.
Neuro 6 Another woman neuro. She also thought MS was a possibility. She ordered evoked potentials. The visual ones came back with a slight delay in one eye, but still within normal limits. This neuro actually talked to me on the phone. She said I needed to find a local neuro to work with me (I'd tried) as she felt I needed to be followed long term and seen often.
Neuro 7 Traveled to a major MS center. A place that was known for thinking outside the box. Drove 7 hours...neuro spent 15 or 20 min with me. Said MS wasn't likely even though by this time I'd had more positive tests. Wanted me to see a urologist and a neuropsych. I did and both showed problems similar to those seen in MS. Due to the distance and a change in my DH's job, I wasn't able to return to him.
Neuro 8 Finally found a keeper. Says MRI shows well delineated white matter changes. I show signs of a neurological disease...possibly demyelinating. She isn't quite ready to dx me, but says she will follow me. Which is all I've really wanted!!!!
Sorry I wasn't so brief. But, I think my story is unique. I have become more and more disabled finally getting SSDI after a three year fight. I know something is terribly wrong and I just want answers and treatment.
So, Quix, I think you are right in your assessment. Thanks for letting me share.
OK, here is the list: This concerns the experiences of Craig.
Mayo Clinic Nov.2006: you look like you are developing a neurological disease but have a normal EMG. Come back when you are worse. Are you sure you're not perceiving the leg weakness and just don't want to lift your legs?? He was very embarassed.
Cleveland Clinic, August 2007: Craig was told that the brain lesions and brain atrophy are normal for a man of 50. The MS neuro there didn't think there was anything wrong with having a positive Romberg and let Craig fall to the floor in the hallway where she did the Romberg test as she stood 10 feet away from him. She thought his inability to walk with one foot in front of the other and loss of balance was totally normal and he must just be stressed out. She said maybe it is sleep apnea!!!!!????? Once again, humiliation and disgust as we paid a pretty penny to go there.
July 2007, NJ neuro number one: oh it is just paresthetica meralgia. Not really my problem. Go back to the endocrinologist. He never even looked at the brain MRI cd nor did he do a complete neuro exam.
September 2007, NJ neuro number two: When the LP came back normal, he said there is no way you have MS and must be depressed. That is why you can't lift your legs!
Oct. 2007, Natl Institute of Health: After Craig was initially told by a NIH neuro who had three other NIH neuros look at the brain cd's tell him he has Normal Pressure Hydrocephalus and "black holes" and brain atrophy, the NIH neuro later changed his story and told Craig that he is just perceiving his leg weakness. You need to see a psychiatrist for severe depression. This was said to Craig even after a NIH physiatrist and neuro-opthamologist and occupational therapist documented that Craig presents like PPMS. The NIH neuro would not listen to anyone and dismissed all of Craig's symptoms because he no longer had a participant for his NPH study. The neuro was so obnoxious that they practically had a straight jacket in the room when the psychiatrist came in. He went from having just one level of leg function on admission to NIH to being a total psych case three days later. Talk about humiliating....
December 2007, Jefferson Univ hospital, Philadelphia PA; The neuro there said that it looks like MS but he needed to talk to another neuro. He comes back in the room and said "I don't need to give you a diagnosis yet. You didn't come here in a wheelchair and you are still trying to work. We have others coming here who are more debilitated than you. They come first. Besides, you really don't want to know what is wrong with you. Trust me. I know what is best for you." "It is much better not knowing". OK, now we were both disgusted and humiliated.
March 2008, Neuro said there was no MS because out of the 20 lesions present, only four are greater than 3mm. So he just has an abnormal brain MRI with leg weakness and no MS. He then told Craig that he was causing his own spasticity and should loosen up his legs. Who would want leg spasticity??
March 2008. Neuro at Univ of Maryland MS center. he finally was the one who said it looks like MS but does not want to diagnose it yet and wants to see if high dose vitamin D will help. Told to come back in October for a follow up. But he did order a brain MRI for this week.
In the almost two years since this started, the neuros have totally disregarded the fact that a man of age 50 cannot run, walk, or move his legs in the water to swim. They do not care one bit. Craig has gone form being an optimistic person who thought that the neuros would help him, to being a totally disheartened man with little faith in conventional medicine. I never thought a person could lose so much function while the doctors did nothing.
I just wanted to say that my heart goes out to you and Craig. Yours is a such a heartbreaking story.
Something has to be done take make sure this never happens again. Maybe getting our stories out is a first step.
My thoughts and prayers are with you both. Hopefully, the new brain MRI will give more answers (although what do they want? Geeezzz). I have four lesions, but since my MRI has remained stable over several years they aren't willing to dx. Anyway, I hope this new neuro gives you the answers you all so desperately need.
The first neuro I went to told me as he enter the room that I had nothing to worry about even though my MRI was abnormal. That there was nothing wrong with me. Back last year, I thought that maybe I was suffering from seizures or even TIAs but he said that there was nothing to fear without laying a hand on me. He said all this, without doing an exam. My doctors in another state believed I had focal seizures but didn't rule out other possibilities but he said that they did not know what they were talking about. He said that their knowledge was under his.
My second neuro was better. He just couldn't come up with answers. His nurse wasn't nice though. She acted like I shouldn't have nothing to complain about since I had no DX even though the doctor saw abnormalities on exam (ex spasticity). When she would call to tell me my results, I would ask, "So what do we do now?" and she would say, "Why, what are you doing now?" Like my problems just up and stopped.
My third neuro was by far the worse and supposedly the best place. I tried to go see a MS specialist but the thing was you have to be DX with MS to go to the clinic. I'm not. So they referred me to their neuro center. I thought at least I got my foot in the door and they have good equipment. I went and was told by the student, who I had an appointment with, that I had some MS symptoms and a possible lesion that my second neuro failed to tell me about on my c-spine. When her over-seeing neuro came in he totally brushed me off. He told me nothing was wrong with me. I had nothing life threatening but he would repeat the MRI of the spine and brain. When I asked what I was suffering from if not from MS or an autoimmune, he said "stress"!
I cancelled my appointment because I later found out that instead of putting me on their 3T, they were putting me on their oldest 1.5T which I could easily go to around where I live instead of traveling an hour. It wasn't worth the drive. A couple of weeks later, I was in the hospital because of multiple blood clots in my leg. But you know that's only stress!!! Nothing life threatening according to the doc at the teaching hospital that was on the top doctors list of 2006. lol
First Neuro did not take me seriously. Told my GP that i indicated i was no longer having dizzyspells. Not true. In fact they were quite bad at that time. Also, he told her that my MRI showed normal even though i had two changes in lesions in the span of 6 months and one was periventricular, ovoid and 8 to 9 mm. I had all the classic symptoms. Why would he dismiss a patient like that?
2nd neuro I only saw once. He added an LP then (due to insurance change) I had to move to Neruo 3.
Neuro 3 seemed to have no choice but to diagnose me with MS because he could not ignore the MRI's and the fact that my LP indicated I had greater than 5 obligoclonal bands. I know that he would have dismissed me if I had not had the LP. He was determined to minimize my issues and says I have benign MS. Atleast he will treat.
First neuro bounced in (I was in hospital) announced I had MS, then bounced out again. Only his resident examined me and saw the MRI (very briefly in the ER). He took back his diagnosis later when all the testing came back negative or insignificantly positive (that was just a VEP that showed some abnormality). No LP done.
Second neuro, was pleasant. Did a 2 minute examination and said that she couldn't diagnose because I didn't have enough clinical signs. Though she could give me antidepressants if I wanted. She didn't want to do a LP unless I had more symptoms because LP could be very painful. Anway, I could come back in 3 months and let her know how I was going.
I never went back. That was 9 months ago. Most of my 'neurological' symptoms have settled down to fairly low and infrequent level. I am finding out other health issues, which may be more likely than MS. Will see.
Neuro #1 disagreed with neuroradiologist that said my brain MRI was most likely MS. He said my brain was atrophied by alcohol use in my teen years, that I refused to tell him my history when I brought several pages, MRIs, reports, etc. He said he didn't believe I had tremors, and more.
Neuro #2 did more testing, but on the third visit (why did I go back?) I left feeling belittled and at fault, blamed for wasting their time and resources, etc. She dismissed my abnormal neuro exam points (the exam was brief), shrugged off any attempt to get to the root of my neurological issues, and told me to go back to my PCP.
Last time I saw my PCP (10 years of good relationship) looked at me and said "You look depressed". I explained that I was frustrated , but mostly I was fatigued. At least when I called today and explained my vision issue and melting fatigue of this weekend, she worked me into her schedule for tomorrow morning.
That is the very brief form; I've said it all in much more detail but am trying to let it go.
I have fibro, a mimic of MS, along with other neurological symptoms. My Internal Medicine dr told me she didn't believe in fibro, and that it was all in my head, and offered anti-depressants. I left her office and never went back. I got a new PCP who treats many fibro pts. I did end up on anti-depressant, as they help with the nerve pain, but not because of it being "all in my head".
I’ve been to one neuro. When I walked in, he told me (without looking at the MRI) that I was too old to have MS. I was 62 at the time. He went out of his way to talk in medical terminology, with a smirk on his face, knowing I simply must be bowled over by his ‘intelligence’. His nurse kept telling us how brilliant he was and gaa-gaaed over him until I finally realised that she really had a ‘thing’ for this rather over-inflated individual.
I wasn’t impressed with him at all. His report to my doctor was interesting. He wondered if I didn’t have conversion disorder. I was ripped. During my last visit to him he told me that he was 99% certain that I didn’t have MS.
The MRI’s that I had were both done wrong, so I asked him about that and so how could he be certain. Well, one just doesn’t question such a self proclaimed god. I listened to him and told him at the end of his tirade, that I just didn’t believe him, that he hadn’t proved anything to me one way or another. (In the first report he had questioned several areas in the brain) What happened to that? I had a positive Visual Evoke Potential that was dismissed also.
Shalynn, I think I need to go to a few more neuros. You inspire me.
I called the MS Society and related what had happened and asked them if older people like myself ‘got MS’. She said of course they did. She had just heard from a woman of 70. This got me going to do research on the internet. I found out that I was not alone.
I’m reading all these posts and really feel for you all. You are all giving me courage to not give up.
The 1st docs where in the ER , 06 I had faint four or five times in two days and off balance and confusion . Did not see neuro Conclusion I was stressed. Sent me to a cardiologist. ( heart fine)
I found a pcp who said mercury poisoning and tx. for 1 1/2 yrs. , thousands of $ . The nurses said I was the sickest person they had seen . So I started pushing for answers, the pcp says its now stress. :) God help me!!
Then I found this place.
!st neuro wouldn't even come in the exam rm when he read the possibility of mercury .
2nd neuro refused to do t-spine when ordering mri. Just smiled at me as if I were a child , " I know what is best". He never did more than a four min. exam. He discounted all of my lesions , said my neuro problems were either from sleep deprivation ( I saw sleep sp. and I am not ) or complication from hep-c..
The hep sp. in town would not see me , hep not active and I did not have a fever ??
Neuropsychologist said significant right hand weakness , significant deficits in cognition but I also had somatoform problem. I had a 2nd neuro-pychologist look at the data and she said it wasn't somatoform , I tested that way because I was sick ...
I now have a good pcp and a good neuro who are fining answers.
Sorry about the space at the end hit the wrong key.. :):)
Its mind boggling that there are people out there ( even ones with illnesses) who don't get or see or believe that this is happening to so many of us , Its truly heartbreaking what so many of the patient population has to put up with
Penn - thanks for the laugh ' have you always been fat ' lmaf . I can relate..
The first one told me that I think I have a disease, but I don't. He told me that my MRI would not change over time, and not to follow up with him even if my symptoms progress/recur. (This is why I went back to him after the clear MRI. My symptoms re-appeared and worsened after a 1 month break.) He ordered a spinal tap, but I never got it done because he told me it would be wasting everyone'e time.
Neuro #2 is willing to follow up with me, but I think he is just placating me and not listening much. He told me "not to worry" about the progression of symptoms and my heat sensitivity. Says the cramping in my legs could be coffee. But does want me to come back in two months, so I'm sticking with him for now. He said this could be something like fibro, but I don't really know much about that.
I am 29, I first went to the doctor for paresthesias in Jan 08. I first noticed odd sensations last summer, not long after a bout of infections back-to-back including bronchitis, sinusitis, and ear infections.
Well I'm not alone. Hi everyone. Yes I had a pitty party and a bad one at that. Bob came and got me so I could read all this.
I have been dealing with bone heads for about 20 years. I have been told it is all in your mind to it is only your diabetes acting up. And so here I go again. I swear the doctors off then when all this stuff comes back with vengeance I go again.
I have seen 3 neuros since 2007. the first said I do have MS because of the MRI and the neuro testing but the second said I don't so the first took the MS away he said it was because my LP was negative.
I have been sent back to another neuro. My eye doctor sent me do to vertical double vision and eye pain. This neuro had me come in at 11:00 and we were done at 11:30. He asked questions and the cut me off. Never completed my family history. and Only checked my walking which he noticed I do have a balance problem. Duh!! And did the tuning fork but only on the left side twice. Never the right side. I was made to feel stupid and dumb and that I was lying about all of this.
I wonder do these doctors take a course in how to ignore their patience? My sister had this problem in 1978 and through the 80's. They have never changed.
Need to go we are going back to the bone head.
Bob will let you all know how it wnet.
thanks for caring.
I, too, had a bad experience at CCF. I had 3 neuros, one opthalmologist, on PT, and one PCP here who all believed and documented the fact that I have a neurological illness. I'm just atypical, so no one was willing to say MS.
Despite a bunch of brain lesions, way abnormal neuro exam (+Rhomberg, hyperreflexia, clonus, ataxic gait, torsional nystagmus, spasticity, etc.), mimics ruled out, the CCF neuro told me I don't have MS and proceeded to tell me to take my Baclofen for the spasticity, take the Provigil for fatigue and get therapy.
He told me that there are many people who don't ever get answers and I would be one of those people. He also went on to tell me that I was overprepared with my organized file and timeline and that was a sign that I was too focused on this illness. He told me that I needed therapy to get past this. He also went on to try to minimize my signs and sx and made it seem like I was making myself worse by focusing so much.
In his dictation to my doctors, he actually acknowledged that MS was a possibility, but that since my MRI hadn't changed in a year, it probably wasn't. He also noted a couple of possible lesions that no one else had ever noted near one of the ventricles, but yet was so completely dismissive with me.
Essentially, I left there in shock and in tears. Quix described this as soul crushing and I totally agree that was the best description of how I felt. I not only crushed me, I ceased to get any help at all except for therapy. The psychologist is the one who convinced me that I needed to go back to a neuro because she said there was no way I was making this worse by being too focused.
My current neuro is great in a lot of ways, but is still hung up on my atypical lesions and won't give me an official MS dx. He calls it atypical MS or CNS Demyelinating Disease. He does treat my sx and has had me on pulsed IVSM to keep me stable.
Since I met Quix on another board, I came over here trying to work through how to start over with this doc to try and get him to look at my whole case again from the beginning.
This whole limbo thing is frustrating and disheartening and yes soul crushing at times. LATW mentions people on other boards who don't have tolerance for people in limbo and that has been a sore spot for me. Some people who got a quick dx just don't have any concept about what we deal with and they can be quite rude about it. I actually had one member on a board PM me telling me I had no business posting about disability issues since I don't even have a real dx.
I do think that we are a minority of people and I think the bad neuros are a minority, but the impact is major. There are far too many of us that have been dismissed and discouraged by doctors. One doctor treating people badly and getting away with it is one too many. One person suffering in silence for years in fear because of bad treatment by a doctor is one too many!
I left an appt. barely able to contain the tears until I got to my car, then I cried hard for 10 mins. or so until I could drive. I am not a cryer by nature. I was ready to give up, convinced I had become a hypochondriac. Thank God I have a wonderful husband who reminded me of some very real symptoms and of who I am and what I am not. There are doctors out there who should not be, as they lack the ability to listen or feel compassion.
Add me to your list.
you can add me to the list...I have seen approx 3 Neuro...2 of them were so rude and didn't even want to listen to me...they checked me over quickly... told me there is nothing they could do for me and see my own GP.
I felt like they wanted me out of their office NOW... They had no concern over how I was feeling (pain)..or my off balance with walking.
after three years..I have a Rhuem who thinks I need to see another Neurol...but he is not going to leave me stranded...he said he will help figure this out. So, I'm quite nervous about meeting another Neuro...
I had one neuro who did my NCV/EMG (I was having severe hip and leg pain that they thought was due to a disc problem but it didn't all add up) - this guy was horrible. Condescending, short. He was totally dismissive until he did my neuro exam. Then he ordered a new MRI of my brain. He must have done the Hoffman's test on me 15 times (that's where they flick your finger tip and your thumb moves when it shouldn't). The radiologist said my findings were consistent with demyelination and MS (this was my second MRI). The neuro said he thought it was ADEM and I should be seen once a year unless I lost my vision. At least he did an exam but he was a total jerk and I thought was being irresponsible by not fully examining me with a cervical mri and LP.
I only have one lesion on my brain (on a 1.5 T) and none found on my spine. But I have a very abnormal neuro exam. I pursued a MS specialist and he ordered the rest of the tests and diagnosed me even though my LP was negative. He's not the most warm and fuzzy doctor, but he answers questions, addresses symptoms and is appropriate.
The worst so far was the neurosurgeon I saw. He looked at my MRI and told me to go have some epidurals and come back when I had weakness and they would do the surgery. No examination whatsoever. My primary showed me the report he sent and he claimed to do a complete neuro exam. On his exam, I was normal. We laughed - I haven't had a normal neuro exam ever. He is supposed to be the best neurosurgeon in Rhode Island. It really bothers me that he would claim to do an exam he never did. And it might have saved me from having useless epidurals since my leg symptoms are not due to the disc problem. I was in such pain, I would have done anything to have it relieved, even the surgery.
Now I do this thing with docs - When they've given me their opinion and plan, I say, "So what you're saying is that you think this symptoms is due to this ______ and your plan of addressing this problem is _____ based on your examination findings of _____ and the tests to date? It's totally annoying to them but it quickly points out the flaws in logic or the lack of examination. I struggle to stand up for myself sometimes, and this way I feel I am being polite but forcing them to clarify.
Have you guys read the book How Doctors Think? It's very interesting.
Brief history: I had a CT for a minor concussion after an accident. My PCP read the radiology report weeks later, and immediately sent me for an MRI because the radiologist noticed an abnormality. Turns out I have "at least 10" white matter lesions, mostly periventricular. She then referred me to a general Neuro, who told me that he thought it was MS. I presented clinically with some dizziness and a left hand tremor. He did an LP, but it was neg. He said he would send me to a MS specialist at the university hospital's MS center. At this point I was still trying to convince myself that there was nothing wrong and this was all a bad dream.
I waited three months for the appointment, then waited 3 hours after my scheduled time for her to see me. She popped in the room, said she hadn't looked at my MRI yet, but would go do that and get back with me in a few minutes. A little more than an hour later she came back in the room, made me walk 5 or 6 steps and looked at my eyes. She thent old me that she didn't think I had MS because of the negative LP and the lack of symptoms. She thought it was a one time event, but she would humor my Neuro by ordering a 2nd MRI. She told me that it was up to me if I wanted to come back and see her, since she was "positve" that it wouldn't show any new lesions. I had that MRI (5 months after the first) and it showed at least 3 new lesions, with some of the old ones getting larger. Both MRI's were done on the same machine with the same radiologist reading the scans. My Neuro wanted me to go back to the specialist and have her make a recommendation becuase he was "alarmed" by the new lesions. I waited another month to get an appointment with her. She was only 2 hours late for that appointment and then gave me all of 5 minutes of her time just to tell me she still didnt think it was MS. At this point I was a bit more knowlegable and asked her why. She said that I would be showing more symptoms and that my LP would be positve. I tried to tell her some of the other things that I think might be symptoms, but she pretty much dismissed me. I asked her what I should do, since a 33 year olds brain should not look like mine, let alone show that much of a change in 5 months. She suggested that I just wait until I show more symptoms or that she could refer me to another Neuro if I wanted. Needless to say I left that office as fast as I could.
I then found this site and started advocateing and educating my self. I called my Neuro a few days later and he saw me that same day. On exam, he noted the tremor, some balance issues that I hadn't even noticed, and I brought up the fact that I have been feeling a bit "stupider" than normal. He did some cognative testing and realized that I am having some cognitive issues. He said he still didn't think I fit the MS criteria, but that he would put me down as "probable MS". He didn't want to take a wait and see attitude and therefore I am going for my thrid MRI in a couple weeks. He said if it shows changes then he will refer me to another MS clinic. I like my general Neuro, and I also understand that he is a general Neuro not an MS specialist. I appreciate that he is willing to follow my case so closely.
I will never go back to that specialist. I have never felt dismissed and patronized by a doctor like that and I was appalled. I ended up writting a letter to the chair of her department.
Reading everyone elses story makes me sick to know that many others get treated the same way I did. It is not right.
(The woman who is working on coming to terms with the fact that in all likelyhood I have MS and who feels lucky that they discovered this by accident because I would not have known) :)
I think this list needs to include how many "regular" doctor's they saw about "weird symptoms." Like PCP's. Family doctor's that you complained to about this or that symptom and were NEVER tested for anything. You were just given anti-depressants or tranquilizers.
LONG before my diagnosis of MS, I went to several doctor's who dismissed everything I was complaining about without any testing to prove otherwise. THEN come the Neurologists many, many years later, after a astute GP realizing that my complaints sounded very much; Neurological in nature. She was a smart WOMAN. All the MEN I went to, dismissed me with depression and anxiety. (Nothing personal to the men on this Forum.)
Presenting to one Neruo, already having a diagnosis of MS, with 7 lesions in my brain and one in my spinal cord and this Neuro said I didn't have MS. He took "away" my diagnosis of MS. He called the lesion in my spine a "flow void," despite a couple follow-up MRI's that showed the spinal lesion in the VERY SAME PLACE. Still his comment, it's a "flow void." Wonder why he did follow up MRI's if he didn't think I had MS?
So count all the family doctors and a Neuro, I've had plenty of dismissive doctor's. Actually too many to count. Seriously.
This "poll" is interesting, but it's a shame that such a poll could not actually bring about major changes among many doctor's lack of compassion or even the ability to LISTEN.
My Neuro here in NW IN referred me to Cleveland Clinic in Ohio. When I returned to him, the copy of that Neuro's report was sent to an old address, and he did not receive it. Well, I had brought my copy. But that did not pacify him, he was agitated that he did not receive a copy of the report, from her.
He barely glanced through it, tossed it on the desk, criticized her for running tests he had run, etc, and for ordering Solu-Medrol Infusions and Prednizone. And basically told me he didn't know what else to test me for. Rich told him, "She still has no bowel function".
He told me to see him in two months, and walked out of the room.
I saw no point in going back to him in two months.
This was the Neuro that PROMISED me last summer he'd figure out what is wrong with me.
Well I guess I too fall into this category. Two years ago I went to a neurologist. I was going to get married in about a month, but the symptoms had been off and on since the fall before this. The doctor did a quick exam and everything was normal. He looked at my MRI which was done without contrast and told me everything was normal. He explained that it must be stress from the fact I was getting married and that the symptoms would most likely heal themselves and never come back again. While he was saying this so condescendingly he also directed it to my mother as if I would not completely understand. My fiancee at the time was also in the room and he wanted to pound the Neurologist. I walked out of that office and my family no longer supported me in my push to find out what it was. They decided that it was all in my mind. The only person who did not believe that other that myself was my husband. I walked out of that office and gave up until this year.
This happened in 2006. Now everything is worse. I am going to my second neurologist. When I went in he did an exam and told me that the only suspect he had was MS, but I did not show enough symptoms to be diagnosed. He said he would like to do another MRI. He told me to watch for some symptoms (which have occured) and to call him. I did. I have an MRI next week. He also told me that there was nothing I could do if it was MS until I was 100% diagnosed. He told me that it would likely be 7-10 years before I would be. So for 7-10 years I am just supposed to let it continue to beat me up I guess. At least I got an MRI ordered with contrast even if it is only of the brain.
It is devastating to read all these stories and know how much suffering has occured. It just breaks my heart all over again, even knowing alot of these stories.
I have to say I am in the very small minority- my Neuro is the best doctor I have. From day one he has attempted to help me in any way he can, (he has always succeeded, but he sure has tried) and has been so kind and understanding of my problems. I did not end up having MS, but it was the frontrunner in consideration for quite awhile by other doctors.
It did take me 5 years for my diagnosis, which in retrospect, should have been somewhat a given, for a medically trained person to put all the odd pieces together. But it did not happen that way and took a bit of bouncing around with each doctor fitting a piece into place.
I just wanted to say that I am grateful for the great Neurologist I have been blessed with and his kind heart.
I too must be considered to fall into the Mistreated. The first neuro I visited after my problems surfaced looked at me as though I was crazy and making these things all up. After looking after me for two years, I was shuffled off to an "expert" that has since looked after me much better. It did take two visits with him though. Another side bar to this, I was stricken with double vision I explained that my opthamologist claimed it was a cn 6 palsy. Then the opthamologist said it was worse then that and I needed to seek a dx from a neuro quickly, the neuro went as far to say it would heal on its own and went as far to bring a med book of hers to show that they go away in 6-8 weeks. Needless to say 4 and one half months later I still have doublevision along with all MS symptoms. just no dx. neuro-opthamologist my be closing in on the double vision. he said for sure it is NOT cn 6 palsy.
Thanks for listening I hope this helps someone else.
I guess I fall into this category as well. Many of you remember when I was told I had a seizure disorder by the first neuro? And the second? All without an EEG to confirm this. I got the letter the neuro sent to my pcp and he told him he suspected a conversion disorder with myoclonic episodes in my legs and arms. I was SO angry about this, but since that time I was dx'd with the Still's Disease and have been explained that the spasticity and pain with it is sometimes the first symptom of the disease and then the arthritis later. I am dealing with the arthritis now, it truly sucks. I would like to write that stupid neuro a letter thanking him for making me feel like an idiot.
Wow, it is depressing to read all these stories of unnecessary pain and frustration.
I guess I'm fortunate that I never saw an obnoxious neuro or was told that it was all in my head. On the other hand, I was extremely frustrated by the fact that my symptoms were minimized and that I kept getting told not to worry so much despite the fact that I felt like my body was in a slow, steady decline, moving inexorably in a direction I don't want to go.
Last June I went back in desperation to the first neuro I saw about these problems, who did a whole new patient exam since it had been a while and then came to the conclusion that I had "hypersensitive nerves." At that time, the two neuros I had seen said I had idiopathic peripheral neuropathy. Six weeks after being told it was just hypersensitive nerves, I saw a PN specialist who did more tests and eventually turned around and said I didn't have PN, I have MS. I don't think there was any significant change in my condition over those six weeks. The only thing different was the doctor. The right doctor really can make a world of difference.
PS for wonko: about never getting the spinal tap because "it would be wasting everyone's time." The same thing happened to me where when I pressed the local neuro for another step. He would suggest something, but then belittle it as a waste of time. I let him talk me out of a repeat MRI (why he thought that even made sense if he was sure I had PN I don't know). In retrospect, I could kick myself, but at the time, I didn't know any better and stupidly believed what I was told.
PS for alastria: I really enjoyed the How Doctors Think book--definitely gave me a different perspective
This list is growing longer every time I check- how sad!
I'd like to say that for now, my new neuro has committed to helping me find out what's wrong and has stated that it's "probably MS" just from my neuro exam and sx. He didn't read the MRI I brought with me, and he booked an appt. for two months from now and didn't start any treament, waiting to see results from previous tests and a VEP scheduled for next week.
It appears that this is a list about neuros' that don't seem to care, but I'd like to say that there are many other doctors out there who fall into the same category, and unfortunetly I've had several of them.
I went to a gastroenterologist who didn't care that I'd lost 25 lbs, and was in constant pain. It turned out that I had a dysfunctional gallbladder that was finally removed by an understanding surgeon.
I went to a allergist who refused to read my transfer records and declared that I was "faking my allergies" and wrote a rude letter to both my family and my kind pervious doctor- in spite of allergy testing that proved otherwise.
My most recent doctor disapointment was in a local rhematologist. He saw that my shoulder dislocate easily when they are pulled on, and then dismissed my joint pain. When we pressed him for tests and answers, he obliged by x-raying my hands, the only joints which didn't hurt and only testing me for Hep. C. I felt so upset when i left the last time, and so I went to another doc. who properly x-rayed my hips and tested for lupus, rheumatoid, and others. While I didn't receive a diagnosis- I felt cared for at the 2nd doctor.
my prayers are for each of you that both you and I may find understanding doctors who are willing to "fight for us" on our journey.
I've thought about how neuros treat patients off and on for the past few years. This may be stating the obvious, but I have to believe that those of us who are the hardest to diagnose are the ones who receive the worst treatment by the neuros.
I'm sure it's because we frustrate them. Maybe it makes them have to think too much? Maybe this same thing is why those who are easily dx'd don't as often get that feeling of being dismissed, and therefore don't understand some of the frustration that many of us go through.
Of course, every patient deserves to be treated with kindness and respect and needs to know that the doctor is trying to do everything he or she can do help them whether they are dx'd or not.
I may not be making sense here (entirely possible).But, I am trying to make a point. What do some of you think?
I agree, how sad this is. Hopefully, we can make some changes.
It would seem that nearly everybody has had a really bad experience with one doc or another and been dismissed as attention seeking or crazy, which is so disheartening for people, no wonder prople get depressed when they are at the mercy of a bad neuro.
I hope you will be able to put these posts somewhere for the new people on joining the forum so they can see that they are not alone
I have seen three neurologists. The first one was in 1993 and she was WONDERFUL! But she moved back to England and I was tossed into the lap of the Evil Neuro/Researcher number 2. He is the neuro that diagnosed me with MS but I didn't stay with him for very long. He has no personality, has very little time for women, doesn't like to be stumped on anything because he thinks he knows everything. I then proceeded to my 3rd neurologist. Now she seemed alright and followed me up every 2 years with an exam and then BANG in October 2006 I started to have problems with the pain in my temple and my left eyelid drooping. She treated me with IV Steroids and weaning prednisone and sent me on my way with no diagnosis. Then in Feb. 2007, I was struck with this pain again. I attempted to make an appointment to see whom I considered my neuro and mistakenly assumed that she would be there if I got into trouble but apparently I wasn't sick enough to see until 3 days later...I was in excrutiating pain and needed help NOW! I went to a clinic that my gp works out of and saw a dr. there and she referred me to a neuro at the University...low and behold it is the second neuro that I HATED but I had no choice. He sent me for IV Steroids and weaning prednisone and diagnosed me as having Paratrigeminal Neuralgia and he said "I will treat you for this as long as you see no one else about this." Of course I agreed...he was going to treat me! Well, he treated me alright...he overdosed me on several medications, never did an MRI until I had severe vertical double vision (for which he advised me to see my gp to see if she could get my emotions under control) 10 months later and when the MRI came back positive for MS...he advised me to seek a second opinion! A lot of bloody help he was!
So I go to my gp and tell her that the neuro at the University wants me to get a 2nd opinion so I would like to go back to my 3rd neuro. She states that she is not sure that the 3rd neuro will see me because of the incident last February and the fact that I did not give her a chance to see me!!!! She was the one that wouldn't see me for 3 days and I needed help that day and after the 2nd neuro said he would treat me if I didn't see anyone else regarding this what the he** was I supposed to do??? I explained all of this to my gp and she apparently sent a letter to Neuro number 3 "apologizing" for the "mistake in judgement" (what a friggin joke...her panties were in a knot cause I saw someone else because she wasn't doing her job!) and she agreed to see me.
I saw her in December of 2007 in one appointment and she deemed my MS as being "in-active" and said that all my problems were due to the "other" neuro over-dosing me on my meds! Well I am off all of the meds he had me on and I am still having difficulty cognitively, pain in my legs, problems with my equilibrium, severe sensitivity to heat, overwhelming fatigue and deteriorating eyesight (that has been checked by the eye specialist and deemed caused by something neurological)! However, I am still not on any of the disease modifying drugs. This evil neuro also told me at my appointment in Dec. 2007 that she will not be dealing with me directly, that I will have to deal with her through my gp. My gp received a letter from the evil neuro stating that my MS is "in-active" and she will not even consider that any of my problems are due to MS. My gp has stated loud and clear to my face that "I really don't know very much about MS"!!!
So, I am not a limbo-lander per se...I have been diagnosed with MS twice you could say but I am not getting any treatment for it because my evil neuro has deemed my disease in-active by the MRI that the second evil neuro did in Nov. 2007. (bloody lesion counter!) I have had one appointment with the evil neuro number 3 and I don't see anymore in the future because no one believes that I have MS and that it is active (at least anyone in the medical field!).
I don't really know which is worse...not knowing what it is that is causing the debilitating difficulties in your life (limbo land) or having a positive diagnosis of MS TWICE and still being told that your disease is in-active and therefore requires no disease modifying drugs which in turn will mean that I have nothing to slow down the disease process and the results could be catastrophic and there is nothing (so far) that I have been able to do about it. I have been taught through this whole dilemma that I can't trust people in the health profession much...why would I when my gp has blatantly lied to me several times and my evil neuro won't offer me any help and has made me feel totally alienated. Even the MS Society wouldn't help me find a new neuro for fear of me being black balled by all of the neuro's...I figure that it wouldn't make much difference...I am getting no help now, am I?
I'm one of the happy few who received a diagnosis quickly, within a few months, without being blown off as being crazy or trying to get attention. So I guess I'm lucky!
However, I want you guys that are still searching for a good neuro to know - once you're diagnosed, you're not out of the woods when it comes to being listened to. Sometimes my my neuro makes me feel like I'm crazy, and I'm the one with neurological damage!
The cognitive changes were one of the first things I noticed as being a problem, so I mentioned them to my neuro. He told me that my MRI didn't show lesions in the areas that would cause the problems I described! Then he told me I was just 'confused' because of my diagnosis. Phhhbbttt.
It took some dedicated pushing from me to get a neuro-psych exam - and on the request for the exam, he wrote that 'patient appears normal on exam!'
So this neuro obviously doesn't get all the subtleties of MS symptoms, or their implications. I shudder to think how he'll react to my weird little seizures I was having last month.
Honestly, you guys, you have to be your own patient advocates, and if your neuro can't understand or help you, move on. I know how difficult it is - I ask myself once a week if I should look for another neurologist. At least he's easygoing when it comes to requesting additional testing - if he wasn't, I'd be going to somebody else.
i had an infection in my CSF in 1987, plus the finding of O-bands then just prior to disk surgery. Surgery was canceled. I was having "episodes" then but didn't know what they were.
That was the first time i saw a neuro. He was called in to evaluate me for possible MS. He put in his report the O-bands were a "false negative" and that the evoked vision test was too expensive and that the hospital there didn't have the tests, but that they may help the evaluation. Maybe he meant "false positive"? All three CSF tests from that time indeed showed the O-bands. So, for him to dismiss me and the O-bands as a "false positive" is odd. The military discharged me around that time and said the VA would follow up on that.
it took the VA 22 years to do another LP. During that time period of 22 years, and with a slew of physical complaints, all neuro's and others just labeled me whatever and dismissed me as "nothing wrong"...must be stress, must be me, could be your heart, fatigue, depression, etc etc etc.
so currently, even with a new neuro and in a new town, the neuro at first dismissed me as chronic fatigue or fibro. i demanded the LP but he said no. then he said he would do a MRI and if that came back with something he would do the LP. can't anyone see where this is going?
that MRI came back with "demyl-disease" which the neuro just couldn't believe it and wanted to basically dismiss it. i had to demand the LP and reminded him i am a service connect disabled veteran and it is my right to the test considering my med history with regards to the test results from active duty. he ordered the LP, and sure enough it came back +O-bands.
he never went over the results except to say the O-bands were there but he couldn't understand why due to other things were not text book in my case. said my cspine was normal although if one reads it, it reads like it is messed up. he mentioned starting meds for MS and said i would like a second opinion and he agreed to that.
he sent me to a VA MS clinic. so I go there, sight unseen by anyone there before and the doctor says right off the top, your problem is migraines. he didn't even have the O-band report!! i had those. he went on and on and on about migraines. i told him he was going to have a hard time selling that to me. the dept head came in then. very nice man, articulate, older, wiser with little ego compared to the younger neuro.
he did a very thorough exam and they went on about migraines and i said i haven't had one in a few years. the younger neuro went on about they have new meds for migraines, etc. the dept head said they wouldn't do any good if i haven't had a migraine in so long. then i showed him the O-band report and the discussion for the day was closed. the wiser doctor said, migraines don't cause O-bands! we need to rule out other diseases and get to the root of that so we can get a treatment plan.
for the first time in 22 years with the VA i felt like someone finally was actually listening to me and not brushing me off. i felt like a human and not a reject. so he ordered some more tests. that MRI came back positive for demyl-disease too in the brain. i think the c-spine didn't show lesions. can't recall if a T-section was done. but that is the section where i get really odd sensations too.
on my way out of the MS clinic and on to the airport, the young neuro got up in my face and said, "your problem is migraines"!! gee, i couldn't believe it. this guy was really pushing the issue. here i am, a guy who has some health issues and this young neuro already had me diagnosed, didn't even have all the paperwork much less had never even seen me before, and he is up in my face about his migraine theory. Anyone really wondering why i have a trust issue with this place? ;-)
so, i get back home and see the local neuro. i ask him what my diagnosis is. he won't say! said it could be anything and the tests are subjective except for the O-bands. he is leaving it up to the other clinic. at least the MS doctor has some wisdom and age and obviously the intellect. i'm sure hoping and praying he does the right thing and not toss me into the VA void.
being a brainiac does not inclusivly equate one to having wisdom. so that is my experience with neuros!
sorry for the long post. but i think it helps me to write these things as I have never done this before. mostly have just kept it to myself.
Another thread through which I read perhaps 15% before realizing it began months ago. It all sounded very timely, however. It's really quite simple: doctors know everything, specialists know more, and patients know either these two facts or nothing at all, or else they make stuff up.
Wow, this is a great post to bring back. Everyone is bringing back old posts lately and even though they came out a while ago, they are still timely. I missed this one as it was before I joined the MS forum. Thanks so much.
My experience with this subject. I have developed a "jerk alert" intenna that goes up when I am meeting with an doctor now. When I hear him/her starting down the path of "its psychological or stress or anxiety" that is the cause of me falling down, not being able to feel my legs below the knee, having spots on my brain and spine, having positive neurological signs, ets, then I head for the door and start looking for someone else. I have been pretty lucky so far with my MS diagnosis process in that I am not having that particular problem. But it did happen with my first neurologist and if it weren't for this forum I would probably still be his patient not realizing I could fire him and get someone else.
I don't have a problem with a doctor thinking that I may be having some extenuating circumstances, stress or whatever, that may be contributing to my health issues, but when they start telling me that at my very first appointment then now I know it is time to move on, immediately.
Thanks again you guys for bringing this post back. It was very interesting to read all the other members' experiences. And Trulyfrustrated, I sure hope you get the care you need out of the VA. Stay on them.
Thank you for bringing this back. I had a rough day Friday and was considering tossing it all out the window including this forum (MS has been ruled out and I feel odd being here)... it was nice to understand I'm not alone in the fact that dealing with neuro's who don't seem to care is getting old.
A year and a half ago I went to my neurologist for the reading of a recent MRI. I had been on Rebif for 15 months. The MRI, horrible symptoms and many multiple relapses showed the Rebif wasn't working. She took me off Rebif and said the only thing that would help me was Novantrone. After discussing the effects with her I advised her I would rather now.
She said since I didn't seem to want to help myself and do Novantrone and would just be doing maintenance drugs that she would rather I continue on with my Family Doctor instead of her. She advised if I wanted an MRI, I could request one from my Family Doctor every 4-6 years. I was shocked that she had dismissed me after a year and a half of going to her.
The entire 15 months she dismissed the horrible chronic pain I was having in my hands, legs and feet and told me I needed to just accept that I had MS and learn to deal with it.
At the time I was on 300 mg. per day of Gabapentin. My family doctor say me for another reason and saw how much pain I was in and bumped it up to 2400 mg. per day. It was such a great relief. Unfortunately, due to the horrible pain I had been in and other symptoms that consitently got worse over the course of the 15 months, I had to leave a job I loved of 23 years. Had she bumped up the meds to help me function during the day, I'd still be working and not off on permanent disability.
I just found a new neuro that is working with me on pain management. I'm now on a trial month of 3600 mg. per day of Gabapentin, though I haven't seen any improvement yet in my pain level....I always hurt. But, at least he's working with me. I just finished a long round of 4 MRI's and will receive the report next week. He wants me to try Copaxone since I seem to be pretty stable right now. Only one relapse last year and one so far this year, compared to the 8 relapses the prior year.
My new neuro was shocked when I explained that my last neuro fired me and about the MRI's not being necessary for several years. Thank goodness my Family Doctor was willing to help and this new neuro seems to want to help.
Sorry this wasn't so brief and to the point.
This is such a great site !! I just found it today.
Wow, this is terrible so many people feeling this way because of their treatment. It makes me want to use the "nutshell" and not for urination this time....No seriously it is sad. Yet it taught me something....
I have to be added too. Neuro one is/was great, that is how I knew Neuro two was the one who is crazy and not me. My exam was not even complete, which if I had never been to Neuro one I wouldn't even know. I wrote 3 pages of what was going on, took months of notes because I call an Ms group who said he was great--neuro two--and to keep a log. Which he didn't even look at. Then when I began to cry because he had Jerkish syndrome, you might not find that in your medical book, it is defined as acting callous with disregard to others feelings, needs, then he told me I was depressed.
So I went straight to psych because I knew she was my sleep dr also and said hey Neuro two says I am depressed. We both laughed and she did the depression survey and noted I was not depressed. Then neuro two's nurse and staff called to see why I had not made a follow up. hum? I wonder? I went back to Neuro one and said sorry if this is not your specialty I only like you, can we work this out with some outside help.
There is good news, he retired. Have to love my pcp who confirmed my dx of Jerkish Syndrome, said he has had it for years if you aren't an easy dx.
You know, those with this terrible syndrome may get us down for awhile but we can't stay down. While all these stories are so sad look how we got up and fought for ourselves and our health! Excuse me PastorDan and others, no offense is meant, but the Lord would have to help them if we have this much fight in us and we are not healthy, imagine if we were.! Hugs to all.
I understand and appreciate your spirit, and I thank Him that He has brought us all together here, in order to bolster one another's knowledge and strength.
Remember that old saying: God helps those who help themselves. Perhaps there will someday be an online forum for neuros whose patients keep moving on to others, a forum where they could either learn something from each other, or reinforce each other's myopia.
I've got another quick story--a neuro who decided, based on sequential misinterpretation of my answers in response to what I now know were leading questions, that I had restless leg syndrome and offered me dopa drugs. Given that (1) I don't have RLS--which I'm very familiar with, and it's very "off" as a suggested dx and (2) dopa drugs have side effects of which I'm not fond (e.g., dizziness), I declined his suggested "experiment" (as he described it). He was pissed, cut me loose, and sent a letter to my doctor basically saying that I couldn't be that bad off symptoms wise if I declined treatment like that and he'd see me when I was ready to do what he said.
My first two neurologists were great! First I moved away, found another, then my 2nd neurologist moved away. Now I have had a glimpse of a not-so-good neurologist. So yeah, now I'm doctor shopping. They work for me, damn it. I pay them for their expertise, but if something doesn't ring true for me I let them know. If they can't handle that or explain better, they are not the doctor for me.
Before dx, I know most of the doctors I was seeing thought I was crazy. When my symptoms got real bizarre they all dumped me. I had become a cash cow for them.
I sympathize with those in LimboLand. If I had not experienced what I did, it would be hard for me to believe.
Hi, I am brand new to this site but certainly not new to being dissed by my neurologist!
I came to his office 6/26/08 after have an episode involving numbness on right side of body, severe pain on left side of head, drooling on right side and vision disturbance in right eye. And while stuck in rush hour traffic in Houston, TX. NOT FUN! Anyway, this guy is my mom's neuro as she has had several strokes.
I have a dx of fibro for 18 months now. This guy does a head CT and MRI and says I have an old bleed in the brain but not a new one and diagnosed me with a TIA. Ok, fine.
After that point he has pretty much lost interest in me except he has wanted me in his office every 2 - 3 weeks. My symptoms have grown dramatically in that time to include neuropathy in both feet, loss of feeling in feet, sensation that the ground is shifting below me, memory problems, losing words, trouble swallowing, more vision problems, continuing migraines and worst of all, major twitching in both hands ever since the TIA which make it difficult to do my job.
I go to see him, I wait two hours in the waiting room, he has a condecending guy who comes in to take history and MINIMIZES everything I tell him including my concerns, then when the grand doctor shows up for his 60 second visit this same idiot tells him how great I am doing. I have to fight to get a word in edgewise.
I've left in tears repeatedly, the office staff has turned me around and put me back in a room and made him go in and talk to me but by then I would just as soon not look at him! This is a recurrent problem for this guy.
Finally about 3 months ago I became concerned that a lot of my symptoms are MS type symptoms and wanted to talk to him about it. So I type up a short list of my concerns, one copy for him and one for me. Short story I hand it to him and he hands it right back. I hand it to him again and he hands it right back. One thing I was fighting at the time was bursting into tears. My mom, also his patient, was in with me and saw the look on my face and knew I was fixing to walk so she grabbed the paper and shoved it under his nose and said to him sternly that I REALLY WANTED HIM TO READ IT. He read it, dismissed everything on it then handed it back to me.
I give up. I need a new doctor. I am glad to know that I'm not the only one going through this but I wish none of us had to put up with it.
I saw a Neurologist for the first time this past November when I first started having symptoms. Basically he said I was “fine” and I need to stop looking on the internet.
If I haven’t kept doing research online, I probably would have never been Dx by a competent Neurologist two months later. I probably wouldn’t fount out until I would have been rush to the ER for now being able to stand up during the beginning of a replace two weeks after diagnosis.
Neuro in my visit to him 3 times in 2007 told me at the end of it maybe i had "samantha lewin disease" (my name)
and at this first appointment going back he said "i dont have your writtian notes so cant compare to last time,but i think i remember you??" we can order the brain MRI but i doubt it will show anything new"
"i cant help you you dont have fibromyalgia but i see you in apin but cant tell you why" hopeyour better soon.
I too have been dismissed (neuro #1) and told that I was being too "aware" of my symptoms (neuro #2).
First neuro: wanted to "rule out" MS - did an MRI brain without contrast and an ENG/VNG test. Came back for my results: everything "normal". He said that because the MRI is normal, I don't have MS. He thought that I might be having "some sort of sensory seizure". When I began to ask questions, he stood up & shook my hand and ushered me out of his office. The appointment lasted 13 minutes. I discovered later when requesting my medical reports from neuro #1, that the radiologist noted a UBO on the corpus callosum - unknown significance. Also, the doctor who performed the ENG/VNG test put in his notes to the neuro that he felt that a CNS disorder should be ruled out as a cause for my vertigo.
Second neuro (at a very well known medical center): The first thing he said to me upon meeting me: I can't guarantee that we are going to be able to help you. Okay. Well nice to meet you too. I told him that I had my symptom list, and a timeline, which he declined to look at. He wanted me to "tell him about my symptoms". He did a neuro exam & told me that my exam was "mostly normal"....He also wanted to "rule out MS".
In my final appointment to go over the tests (EMG, MRI (no contrast) of T & C spine, blood work galore and VEP - all normal - he tells me that all they can find is a severe Vitamin D deficiency and that I am "too aware of my symptoms" and that "a lot of people have these same symptoms"....really? A lot of healthy people experience vertigo, numbness & tingling, bladder issues, hip pain, blurred vision in one eye/pain in eye, sharp burning pain, fatigue, sensitivity to heat, sharp, quick pains....okay....well I guess I am normal then! He told me to go home & "try not to think about my symptoms so much".. he also said that he "thought that something was going on, but until something shows up on a test, there is nothing he can do"...
Just recently I received all of my reports from that well known facility, and in neuro #2's chart notes - he noted that I have "left disk pallor" in my left eye. I asked in the neurology "ask a doctor" forum here on MedHelp, what that meant & Dr. Kantor told me that it usually means that there has been some previous damage to the optic disk. He suggested seeing a neuroopthamologist.
Why didn't neuro #2 tell me this? Who knows. Why didn't I see a neuroopthamologist while I was at the well known facility? Who knows. Neuro #2 sure didn't see any reason to tell me anything.
Where are the doctors who WANT to listen to their patients? I would like to meet one someday.
Hi There, I came across this OLD Post of yours but feel it hasn't become Outdated at all.
As you know I haven't had any thing nice to say about any of the Neuros I have seen in the past 23 years. Sorry to say as of this date that hasn't changed.
I did see one decent one back in 1995, but once I was no longer able to stand riding in a car19997 I had to change to a Doctor in town, needless to say HE WAS FIRED after going to him for six months ( I wanted to give him a fair chance) He was like all the others that I fired... I was treated like a #... he was disgusted with me because nothing he tried worked, he said " I think you enjoy being this way" That was the Last Straw! I knew I was right all a long..HE WAS CRAZY!!! I fired him on the spot, told him I wouldn't be making any more appointments. This was around the time my bladder started giving me a lot of problems, he kept saying it was my age, nothing to do with the MS. I knew he was Wrong. I was 53 and I was also getting the feelings of my tush being shocked with a live wire every time I rode in a car. Yes! He seriously said, it was because of my age, and NOT THE MS! How Stupid did he think I was.
I am so grateful that Dr. Patel had the sense to send me to a GOOD Urologist who knew about MS effecting the bladder and Dr. Yamada was willing to take me on.It's hard to believe we have been together for almost ten years.
This is why I'll never go to another Neurologist.. They just haven't been worth my time or the effort I have to make to get to my Doctors. It was a Neurosurgeon who made the DX of MS when he saw my MRI. I bet a Neurologist would have missed it.
I might sound bitter, and on this subject I am..... I have experienced to many bad ones, and after reading how many others have had to suffer because of a Bad Neurologist it makes my blood boil...
Sorry for the RANT, but I sure feel better ;-)
YES I have had very poor experience with neurologists and have been very angry...to the point that I never went back to them. Even my MOM has been angry at one of them.
The first neuro that I saw was during my first hospitalization. My mom was there and he was very concerned and told me that it was probable MS. He said that even though the MRI is clear right now...it probably won't stay that way. He stated on my discharge report "Clinical MS."
But then I saw him for my follow-up after I left the hospital. He spent five minutes with me saying that nothing was different and we'd repeat the MRIs ever couple years. I asked what could be done about my symptoms and he just wanted to prescribe me an anti-depressant despite the fact that I told him I didn't want one and wasn't depressed.
He wasn't all that bad...but that 5 minute visit in his office really bothered me. I was rushed out and had no plan of action.
Neuro #2 was absolutely terrible. My PCP thought possible seizures after a blackout spell I had and couldn't remember (my mom found me unconscious and unresponsive). I had an EEG (which he read and discussed the results with my PCP) and it was "abnormal" and I was started on anti-seizure meds and told I couldn't drive. Well...almost a month later I finally met with the man for the first time. Mom went with me...as I couldn't drive per his orders. He said it was just abnormal...not indicative of seizures. So he was going to repeat the EEG (the first was sleep-deprived and the second was not...so comparing them was kinda stupid). He completely dismissed all my questions about my MS symptoms and provided no explanations or suggestions.
My follow-up appointment with him was even worse. He continued to dismiss me and did not even seem interested in discussing it. He seemed to just rush through the neuro exam and didn't really pay attention to anything I said. *I* had to ask him for the repeat MRI. He was just going to do it of my brain and *I* had to ask him to do my c-spine. And he *refused* to do my L-spine. As I was scheduling the MRI...I told them that I needed all my records as I would be going to another neuro.
Then came the part that made me even more mad. Reading through his notes...I was absolutely LIVID. Even though several of the neuro exams were clearly abnormal...he listed everything as normal. He stated that my pupils were equal size...yet it's CLEAR to look at them and see that they're not (anyone could see this). He also stated "normal" results for tests that he never even did. I have had a lot of problems with lack of sensation. Well...all he did was tap his fingers on each side of my face and asked if it felt the same on both sides. I said "I don't know...I think so?" because when it's dull it's really hard to tell. And that's all he did. But in his notes he stated that it was normal to "light touch, pinprick, vibratory, and position sense" Yet he didn't even do pinprick or anything! He LIED on my health records and it just makes me SO mad.
I'm preparing to meet with Neuro #3 and I really hope for a better experience.
Count me in. First neuro in Navy stated tests were false positive. I was sent to the shrink world. This first neuro dismissed cognitive, balance, sensory, and loss of taste sensations as a shrink issue and/or panic episodes. He didn't include them in his report. All my LPs back then were positive for Obands. I have never had a negative LP for O-bands
The VA never followed up on it. They did give me a VEP once, it was negative and said no further testing necessary, I didn't have MS. Regarded first Navy neuro's statement as gospel. The never followed up on brain images or LPs although I had repeatedly asked for the LP so they could compare to the Navy tests. This is documented by the way. More psych visits although the history of physical issues would still occur.
Third neuro told me to go enjoy life although my equilibrium issues, headaches and sensory issues were coming on strong then. He did weak MRIs and said nothing there and that migraines were causing the questionable images seen on the weak MRIs. He wanted to know if I had ever had a head trauma. Maybe in high school I think, so he decided that was the cause of whatever he saw in the images. Suggested I take up yoga and that my problem was soft tissue injury and depression.
Fourth neuro wasn't much better. His thoughts were I had CFS or fibro and migraines and couldn't handle stress very well. I told him about the Navy and O-bands and stuff and he dismissed that. But he did opt for a MRI of my brain due to the chronic fatigue I was having. I said if the MRI shows something then can we do the LP to see if I still have the CSF inflammation. He agreed although I don't think he thought the MRI was going to show anything because he said as much. Well, it did show something and he kept his word and had the LP ordered. And sure enough, O-bands >5. Second MRIs at 1.0T returned "demyelinating disease". He called me at home a month later suggesting DMDs. I opted for a second opinion, he agreed, and off to the VA in LA to a MS clinic I was sent.
Saw two neuro's there. One said my issue was migraines, this was a younger doctor. He couldn't listen to anything I was saying as his mind was made up, YOU HAVE MIGRAINES! Neither of them had the O-Band report - go figure that is why I was sent there!. But I had them, hand carried the paperwork. After the physical and history intake I showed the older neuro the Navy LP results for O-bands and the latest one. That ended that visit. He said that is not normal and we need to get another set of MRIs over time, run more tests to rule other things and find out what is causing the CSF inflammation. The younger neuro got in my face on my way out and was still trying to force the issue that my problem was migraines! I don't see him anymore.
Then in May, the older neuro sent me DMD literature to study to choose one and said it is a good to idea to start one due to he was almost positive I have RRMS.
Then in June, his office called and said they wanted another LP because the other one was false! Sound familiar? This is the same BS the Navy neuro pulled. Of course it wasn't negative. We finally got that corrected and now he wants another set of MRIs. More excuses and more tests. To the back burner of the VA system I've been placed again.
This older neuro in LA has said at times he thinks I have benign MS, then RRMS, then tests are negative when they are positive. Now, he says if there are no new lesions, or changes then that means I may not MS and they don't need to treat me. From what I have researched and read on this forum that is plain nonsense.
With that in mind, I sent a request to my local neuro and his boss to have these next set of MRIs at 3T. If they really and truly want to get to the bottom of my issue, diagnosis me and provide treatment then they should not have a problem with the 3T. Why the heck keep doing .7 and 1.0T series with regards to my particular situation and trying to make a diagnosis. Otherwise, it looks like to me and others, they don't want to diagnose it.
I've come away from some of these visits with enough anger that is crippling, often times just plain humiliated and at a total loss. The only way not to feel humiliated is to stand your ground and get mad, but at the VA that is not a wise thing to do. You'd be surprised what they write in those records. Feeling ignored? One doctor here just typed away every time I saw him, did half arse physicals and made smart arse statements that due to I was born in a sterotypical slow southern state, I couldn't handle stress very well. Then he said, you know the VA has spent considerable money on you and they aren't going to find anything wrong with you. This is just prior to the brain MRIs and LP. He doesn't make those statements anymore.
Almost all of them have implied that my symptoms were insignificant or stress-related or imagined! No wonder they never wanted to do those tests all these years. Now that they have and they are positive they are still covering someone's arse and leaving me out to dry in limbo land. That is my take, otherwise like Doc Q stated here once, if they can spend all these years telling you what isn't wrong with you they certainly could spend that time trying to get to a diagnosis and treatment plan.
I had to contact the VA and request them to explain why the VA wouldn't even put these test results in the history section of my record so doctors could see them. Sure they are on a computer system somewhere but if you don't know that and don't know where to look doctors won't see them. And they use that line a lot too, "I can't pull up your records"!
I know you asked for a short note, and I didn't do that, sorry.
My expericnec has been similar to yours!! AFter being dismissed locally, I travelled a great distance only to be again dismissed at a highly esteemed institution. Based on experience, in my opinion, neurologists:doctors as divorce attorneys:lawyers (they are, with few exceptions, a cut below).
Yesterday, though, I tried a new neuro recommended by my PCP's office. She actually listened to me (because last week I was in the ER with stroke-like symptoms of blurred right eye vision, sudden extreme right-sided weakness, and mental fog). Yesterday, she agreed I had lost muscle strength in my hip flexors and yesterday I had a positive Romberg and could not heel-to-toe at all. She has ordered an MRI (because, of course, the estimed ER, like most other ERs, only uses CT scan for stroke-alert patients - what a JOKE - they are so unreliable for brain issues!).
Can't get an aswer about whether or not my surgical clips from my thyroidectomy are feromagnetic or not, but a radiologist said it doesn't matter at this point because after nine years, enough scar tissue would have formed to hold them in place during MRI).
So, am continuuing the fight for an answer. Years of waiting is agonizing (as you know). I am so thankfu that you are willing to speak out, as a physician, on how other MDs (neuros) are treating patients seeking answers. Thank you for validating our concerns with your experience!!
When I spoke to my neurologist regarding my initial test results (they were not helpful test results), I asked her where to go next? There was a silent pause. I said, I'm still having problems, mobility, cogitive etc, and she said something like.. well, we could look at the cognitive problems. Then I told her about my new eye symptom and she sounded enthused for the first time. (I've only had one appointment so far.)
I understand that doctors are scientists. I understand that most of the neurological symptoms that people have can be faked by someone who has researched the symptoms (muscle weakness, some tremors, cognitive function, etc). The symptoms that can clearly be determined to exist and which can not be forced to exist are fairly small in number. I understand that they feel like they need to be vigilant against people with psychiatric and addiction problems. But I also am very aware that the neuro exams they provide are also subjective. If you strip away all of the subjective and the things which are fake-able. There isn't a whole lot left. Even my elevated estrogen count could be faked by taking estrogen.
*However,* they also need to be cognizant of the fact that the human body and brain are enormously complicated and there are a lot of things that science does not yet understand about them. In my opinion, dismissing symptoms as psychosomatic after 1-3 visits is lazy and unprofessional. The research I have done indicates that a tremenous number of neurological problems cause wide-ranging non-specific symptoms and the causes are just as wide ranging. There are a huge number of tests which can be run which typically aren't (for whatever reason -- maybe the doctor thinks its too rare or too expensive or they don't know about it or you have a credibility issue).
The only real luck I have had with doctors is to present evidence that is irrefutable. For example, back in my 20's when I first sought diagnosis for intermittant swelling and pain in joints, my doctor said that my knees looked normal. So, I brought my tape measure to every appointment and he kept track. When he saw a 4" difference in size, he referred me to a neurologist.
I was having a lot of problems when my estrogen started going up. Nausea on the first day of my period, discolored discharge, dizziness, emotional wonkyness (I am usually very even-tempered and calm). I went to a PCP with a subspeciality in endocrinology who told me I was getting old and should expect changes (age 35), to a doctor who thought it was just depression and gave me prozac and xanax, and finally a friend figured out my symptoms (which by then, 3 years later were pretty extreme and included sweats and hot flashes and what not) were cycle related. I told my third doctor I thought I had peri-menopause and she is the first doctor who ordered hormone testing. My estrogen was 4X higher than normal. No wonder I felt bad. After a month or so of testosterone to bring my estrogen down, I was back to normal. It's very annoying and disheartening to deal with people who aren't good at what they do or persistent in doing it. If I did my job that way I wouldn't be employed long.
I am not expecting a lot from this attempt to get a diagnosis. If my doctor suggests it's psychosomatic, I'm going to ask if she is going to refer me for psychological testing to rule that out.
I actually prefer to spend little time concentrating on whatever this is. I find dealing with doctors and disease annoying and would prefer to spend my time and efforts on things I get something out of. I'm not sure how long I can make myself pursue diagnosis, but we'll see.
I called my neuro last year complaining of severe eye pain. I have had optic neurosis and thought that it felt quite similar. My eye balls them selves hurt and I had a headache that was in the center of my forehead. (I had forgotten that I had gotten new glasses 2 weeks prior.) The pain became so bad that I called his office and asked if there was anything I could take. My previous doctor had specialized in headaches and had always given me very effective drug treatments. My new Doctor I think has stock in nuerontin as this is his cure all for all ailments. He upped my dose of neurontin predictably and it didn't help... so I called back and was given an anti inflamitory which also didn't help.
Then my ophthalmologist's office called to check on my new glasses. They said because my exam and picking out glasses was 6 months apart from one and other... I told them about my eye pain and they had me come in... turns out that my prescription had changed drastically in that time period. They ordered me more new glasses and the pain subsided.
About a month or so later I went in to see my neuro and I thought that this might be something he would want to hear about so I reported that the eye pain I had been experiencing was due to my glasses. He looked right at me and said so your telling me that you bothered another doctor about this untill you got an answer you liked huh?
Bothered?? I was soooo pissed off... I guess he forgets that he works for me... how dare he??
My Neuro is the only doctor that I have ever had that acts like I should be grateful for any medical attention that I eventually get anywhere!
I will try this again - lost my other message!! WHOA!! I cant believe this!!! Just look at all of us that have been jerked around!! My first nero had this thing for reflexes and ran it as HARD as he could in my arch- he said - someone had told him he was cruel for doing that- imagine - at the time i didnt know the numbness comes and goes with some.. Oh yeh he asked if i wanted ms!! duh!! How dunb can a so called specialts be?? well 5 yrs later or so i was told of the blessing i have. But think of all of us, our quality of life would of been so much better for years if they would just tell us!!! tick was surely ticked!!
That is a doctor that needs to be dumped! I agree, what an outrageous and mean-spirited thing to say. Also, Neurontin is not the end-all-and-be-all of meds for MS. He sounds like an arrogant, shallow thinker with poor self-esteem.
There are wonderful docs (neurologists) out there. You need one!
My evil neuro #1 - after only doing some basic blood tests and a brain MRI that he didn't even look at - told me that there was nothing wrong with me he could help - that I just needed a good psychiatrist. He said he wasn't going to "crack my brain open and do surgery." Of course I never suggested such a thing!
He even made note that I "surprisingly" had clonus in my left foot. Heck, I didn't even know what clonus was at that point.
After we had a mutatl parting of ways and I got copies of my records from him, I was in total shock at the number of mistakes in them. He told my rheumatologist that she may want to send me to a rheumatologist. I started wearing glasses and had to have them changed twice in four months because of problems with my right eye - yet he reported that I hadn't seen an eye doctor in years and that he suggested I do so. He said he was waiting on a report from an ENT that he never even sent me to. He even sent most of my records to a primary that I don't even see. The list could go on and on...
To say the least, my experience with this guy was very bad. I just hope I have better luck Tuesday with the MS specialist. I'm just glad my primary doesn't think my problems are "all in my head."
I've been at home with my special needs 5 year old for the last 2 years or so, for many reasons. One being I was on the verge of getting fired anyway because I just didn't function well enough mentally & physically to do the job anymore. Fall 08 I got too bad to deny it anymore, the extreme fatigue, leaden limbs, brain fog, and PAIN. Spent a year on anti-depressants & a few months getting snapped around by the chiro. Got worse, not better, and my doctor had the nerve to say I was like this because I was BORED being a mother at home, I was tired because "playing with kids makes me (the dr) tired & bored", that being around my child so much had dumbed down my brain, and depression about that was causing my pain!! How's that to make you feel like sh*t?! Insulting me as a mother, devaluing the far from boredom in caring for a child with medical & behavioral disorders & acting like it was just LIFE!! My new doc diagnosed the old one as "suffering from a severe lack of imagination" among other things! YEAH< OK- being a MOM makes you sick!
Thank you so much for your "How many of you..." discussion, you returned me my confidence! I am not an MS patient, but I bumped into your forum searching for "conversion disorder". I have a muscle disease - and, believe it or not, neuromuscular drs are no better than MS drs. Unlike many of you, I did have a diagnosis (a rare myopathy) for two years, then I got a rapid progression of muscle weakness in the arms over a year, had a temporary paralysis in one arm recently. First, saw specialists in myopathies - "yes, it is consistent with the diagnosis, go see the best expert in the US on your disease" - saw the guy, he did additional tests, and did not confirm the diagnosis...Guess what - now it is "possibly a conversion disorder", but nobody refers me to a psychiatrist even though I ask! My neuro is unsure, advises me to go to Mayo Clinic first to rule out physical problems. But - once I mention this "conversion disorder" to any neurologist, I instantly become a walking anecdote, they either laugh at my symptoms, or feel offended because I bother them with such a fuss over nothing. I did not have any psychological issues before, but now, after all the humiliation I had, I do have issues - I don't have guts to go see any doctor anymore, even a dentist. I cry all the time remembering how they treated me after my "real" diagnosis was not confirmed. Everybody was just dying to show that my weakness was "give-way" or "effort was suboptimal". One neuro even made me counting aloud while trying to lift my arm, to "distract" me. I felt so broken and helpless, feeling such a nuts - and I am a scientist with Ph.D., working in physical science all my life, probably not less educated and trained in my field than those guys! Throughout my career, I have been always treated with such a respect by my collegues, but when I see a neurologist, I am treated like a schoolkid trying to get an excuse from school. Thanks again, I am feeling much more like myself now; always been an optimist, but these people just broke me down.
I had my first major symptom at about 27 in 1984. My doctor told me to stop smoking and it would go away (my legs didn't work for about 5 hours). Then in 94 I kept waking up with my midrif numb and the doctor suspected MS right away, and he ordered mri..clear. He told me he knew something was wrong and checked pressure points for fms. I had 12 out of 19. So I was rather lucky that I had that to hold onto. The first doc who dismissed me? He teaches now in MA and I found his email. When I was dx'd in 2007 (yes, it took me 23 years to get an MS dx) I wrote him a long email about how he failed me and made me feel small and told him if he was going to teach medical students to please teach them to listen to their patients and not make assumptions. Geeeee...wonder why he didn't write back. LOL
My neuro who dx'd me? He's a wonderful gentle man and I love him. When I first saw him he didn't think it could be ms since I was 52 until he saw the mri results.Because I have several autoimmune deseases he sent me to CCF for a consult. I wasn't crazy about the guy, but he was polite and attentive...he recommended a drug trial to my neuro. I said to my neuro, 'MS won't kill me so why should I test a drug that could?" He smiled and said, "You have a very good point there."
Perhaps I was blessed with this neuro because I did not mention MS at all. I just asked him to please help me find out what was wrong.
Oh, count me in too! Even my current neuro (who is incredibly thorough and careful and seems wonderfully smart) is cold and completely unemotional - I mean, I think he's pretty great at dealing with neurology, but you can forget hearing anything like "that sounds hard" or "congratulations on graduating from college"! He interrupts and stares blankly at me during appointments. I'm currently trying to figure out if I ought to dump him over this... I mean, I know I'm going for his neuro expertise, not his sunny personality, you know - but yikes, talking about the ways my nervous system is failing is super scary; I could use a little babying - and appointments with him just feel kind of... cruel, I guess! You bet I cry after them. This is even when he ISN'T telling me to go see a shrink.
I had a Christmas Eve appointment with another neurologist a couple years back. He said to me, "What is so wrong with your life that you have to come up with all these symptoms?" Merry Christmas to you! Ugh.
Thanks for asking the question! I think one of the BEST things about this board is how is shows us that we're not alone in our horrible experiences with doctors. I'm so grateful for that, and for everybody who has shared their stories! It just makes me feel so much better to know I'm not alone.
I've been told by different doctors (never by my pcp) 'it's in your head', 'you're a hypochondriac', you're a junky looking for pills' before my fibro dx in '04. never mind I didn't have any medical problems until after my ex attacked (5/2000) me and my upper and lower spine and my right shoulder took a direct hit/blow.
I would tell the doctor, just tell me what's wrong with me.
I started noticing a slight heat intolerance in '08, but blamed fibro even though it didn't make since. my ms-like sx struck hard in jan '09. my pcp believes me, for that I'm very greatful. a lot of doctors now blame the fibro, ignoring the fact my kinda-new sx don't fit. for example, I saw my dentist last month for a cleaning. I asked about tingling and pain I feel on the right side of my face and sometimes teeth. She blamed the fibro.
Where do I start... Without looking I honestly can't say for sure how many neuro's I have actually seen including a MS specialist at the Mayo Clinic. I think it's been 6 or 7 of them now.
I've been called crazy, lazy, a hypochondriac, depressed, attention seeker, a drug seeker, and that's just to name a few of them. I've been "diagnosed" with Lou Gehrig's Disease, Carpel Tunnel, and my favorite a Paranoid Schizophrenia... What???
My Primary Care Physician actually diagnosed me with MS from the start but all of the so called specialist seemed more interested in proving him wrong than trying to find out what was wrong with me...
I have been laughed at and completely humiliated at times but my family and I knew something was wrong and we decided early on that we wouldn't stop until we found someone that would give us an answer... It didn't have to be MS but we needed a good explanation for what was going on with me...
I would love to send each and every one of these doctors my current records and diagnosis along with a letter telling them what I thought of them. I'm a better person that that so I wouldn't do it but dreaming of doing it makes me feel good inside...hahaha
Quix, I have never thought you where to hard on the neuro's out there and if anything your not hard enough. I think all of these post pretty much proves that theory...
Any way I just wanted to throw my 2 cents worth out there...So now I think I will go have myself a weenie roast and throw each of their names in the fire...hahaha
>>Recently someone challenged me that people aren't dismissed, disdained, discarded or humiliated by neurologists as often as I seem to imply.
and now after all these posts what do these people think about their challenge to you?
i would add to my story above but there isn't any use. you know the story and have seen docs to validate it.
now i'm in anger management over it and soon to be (some form of ptsd) therapy over it. and those two things are directly linked to the dismissed, disdained, discarded, humiliation from the world of "getting to the bottom of my illness from the VA".
to be fair: some VAs are heaven and some certainly are not. for those that are good, please keep up the good works.
I'm in limbo but my neuro is labeling my 20 lesions as migraine and old age..(I'm 41)
I have been experiencing symptoms since last June and he insists on theory..All my MRI reports have statements concerning MS and that it sould be included in diagnosis...all consistent with demyelination and gliosis...
How do you have a migraine when the symptoms that last since June and don't go away when the migraine does...And as far as migraines I am lucky if I get one every 3-4 months at this point....
He has weened me off migraine meds to see what I am like w/out them...despite a sinus infection which I beleive gave me a headache...I have not had any..
Mercy- well you should ask how many had a good neuro to start with- lol
wonder if there was ONE-
I know its old post but me to it was like- you dont want m.s, do you-- duh
and are you on street drugs???
its really sad what most of us went through-
Hi... First let me apologize because I can't follow & focus on all the posts, but really want to know what everbody has been through with horrible neuros & drs in general. I was DXd last Sept but have had symptoms for ten years. My story is to long to try to recap & some of the reason for my not being DXd sooner is probaly my fault since I only went to the Drs when I had to bc of no insurance... But I have been told I had umpteen different things thru the years with no one even mentioning MS since a neuro dismissed it in 2002. Now the MS specialist I'm seeing is wonderful but cant understand how it had been missed for so long. He says for my age, 29, I have pretty much the most severe case he has ever seen with all my test results being thru the roof??? This probly makes no sense but hope its not too bad :~) Hope everbody has a great day & weekend!!!
My first relapse was so odd that I didn't even think of going to a neuro. Metal taste in my mouth and slow moving pain that ended in my eye. After many doctors I gave up when symptoms got better. With my second relapse, numb from the waist down, I was told it was anxiety and they tested for diabetes. I went to my PCP on a Tuesday who referred me to a neurologist. I called on Wednesday and lucked out and they had a cancellation and could fit me in that day. I saw him and after a physical exam he ordered an MRI and scheduled a follow-up on his next available day, a Monday. I had the MRI on Thursday and the results were rushed. My Neuro called that same day and rescheduled my appointment for Friday, his day off. I went to my appointment and he clearly came in at 8:00 on his day off, he was wearing golf clothes to give me my diagnosis. I love my Neuro, but his PA always seems to downplay what I am feeling and without my awesome DR I would be lost. Part of the reason I worry about mis-diagnosis is because it was relatively easy to be diagnosed.
All, I'm playing catchup today and checking through lots of posts - this one had me pause and spend lots of time reading and rereading your posts.
There are a number of new things listed here and I hope everyone who wants/needs a reply to their post will start a new one, separate from this. Many times we skip over something that was started this long ago; May 2008 was 3 months before MS had even been mentioned to me! So please, please start a new thread if you want to get a response to your specific comments.
That said, I just want to say reading all of this makes me want to run screaming from the room. Even if you are suffering CD or other mental issues, and I'm not saying any of you are, the patient deserves humane treatment. Telling a person they are crazy and then showing them the door is not working to heal that person's problems, it is compounding the illness but adding on more problems.
This is all so wrong - I wish you all luck in connecting with the right doctor for you. I am in the same situation as lissalou wtih a dx that seemed impossibly simple - so much so that often I stop and wonder if it is the right dx for my situation.
To Kot1972: You wrote, "I don't have guts to go see any doctor anymore, even a dentist. ... these people just broke me down. "
I can sure identify with that. Well, I was OK going to my dentist, because I'd known him a long time, but I developed a block against seeing doctors of any kind that was hard to get around, even doctors unrelated to my neuro symptoms. They broke me down, too--they really did. I had a very difficult few years. That was when I learned what depression was (iatrogenic depression!!).
I eventually became hypersensitive to any remark that was dismissive of my symptoms; for example, when I told a nice-as-pie new gynecologist about my daily flu-like achiness (she'd asked why I take OTC painkillers daily), she said, "So, aches and pains then..." and that made me so angry, as if having daily achiness in your arms and legs is normal. So I never wanted to talk to her again.
It once took me MONTHS to get up the courage to go to my (old) PCP and ask about a bleeding spot on my back. Her remark (when I'd told her that I'd been suspected of MS) was "MS? You don't want to have THAT!" and never asked me a thing about it again.
For a really long time I didn't see ANY doctors. I finally got up the courage to go see my old podiatrist when my ankle tendon got worse and was causing me a lot of pain. I debated with myself for weeks or months: is he going to pooh-pooh it and think I'm a hypochondriac? But if I don't go see him, is this just going to get worse until I need surgery on it?
After I finally saw him (and he didn't make any awful remarks), I slowly got up the courage to do other things, such as be seen for longtime postmenopausal bleeding and take another stab at figuring out my dizziness with the ENT. But every time, I went through weeks or months of agonizing before calling for an appointment.
Finally, when I got a new PCP who takes me seriously--mirabile dictu!!--I even finally took his advice to see a neurologist again, after 6 years. (It didn't do any good--I didn't even get a new MRI, and the neuro was a pretty clueless type--but at least I wasn't any worse off!)
I was never OVERTLY belittled, humiliated, or told my symptoms were all in my head (I think one reason is that I have one severe, measurable, non-fakeable symptom--a sudden hearing loss), but I clearly got the message, from a number of different doctors (from PCPs as much as neuros), that my symptoms were not important, not connected, not severe, not meaningful, not indicative of disease, etc. and I should just forget about them. Sure... if THEY had Lhermitte's, hearing loss, daily dizziness, paresthesias, bilateral trigeminal neuralgia, trouble walking, etc. THEY could just forget about those symptoms and be confident they were meaningless.
All I can say is, hang in there. Forget about the unhelpful and dismissive doctors, hang on to any good one you find, and just manage your life as best you can. That includes insisting on being TREATED for symptoms that are significantly affecting your life, even if they can't diagnose you. Hopefully you have a good PCP, at least. It was like heaven when I finally found one, after going through four duds.
As far as seeing other doctors (I'm sure not going to give you any advice about neuros!!!), just rehearse what you're going to ask them. Describe one clear problem that you need relief from. They want to know what they can DO for you, so don't tell them your whole story if you can avoid it; just focus on one thing. I think that's why my PCP has taken me seriously; I didn't even tell him about my neuro symptoms for the first year, only asking him to continue my prescriptions and refer me for a hearing-aid implant. HE was the one who eventually started asking questions. It made a huge difference in how he looked at me, I think. (Or maybe he's just a great doctor.)
In the end it didn't make any difference to diagnosis (or lack thereof), but it made a HUGE difference in my psychological health. I felt like a great burden was lifted from me when I realized I'd found a PCP that would LISTEN to me in an open-minded and serious way, so that even if no one could (or would) solve the neuro mystery, at least I could go and ask someone about other things if needed.
If *I* can luck out and find one good doctor, ANYBODY can. Hang in there!
I am sitting here trying to type with one eye closed and my ears acting like they are stopped up or something. I am on prednisone for the 2nd time in two weeks and my symtoms (symptoms) are lessening a lot.
On Jan 3rd I had an episode of vomiting, tinnitis and eye blurriness. I work in a hospital so I was taken to the ER where I was given meds and sent for an Cat scan. The hospital has a stroke accredited ER.
CT came out ok which was a relief because I immediately thought I might be having a stroke when this happened. Next day went to a ENT who did many tests and thought Meniere's. Wen't to neuro, had MRI, think brain only, it came back normal. Neuro says he suspects
Bipolar disease. I have ADHD diagnosed 17 years ago....Who knows, I feel stupid.
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