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Disastrous Meeting with "big kahuna MS neurologist"!
Hi, all,
I had such high hopes for this meeting. This neurologist was so highly estimed by others with MS. Even though my first meeting with him demonstrated a textbook-ruled, rigid mentality essentially not open to older folks being diagnosed with MS, I really thought that when he saw my films he would see the light. Ha, ha - the joke was on me.
This anal-retentive MS neuro has a strict rule about his patients' MRI films: They MUST be converted to film from the complementary CD given at the imaging facility (at a cost of $10 per sheet). Thus he gives the impression that he actually will READ those pricey films. In fact, as I was sitting in his waiting room for over an hour and a half beyond my appointment time, I thought, "Gee he must be using this time to review the 800+ shots on my films." I felt happy that he was actually doing what he implied he would. Silly, ever-optomistic me!
When I finally met with him it was quite apparent: There next to him was the big stack of heavy films I had lugged into his office - totally untouched by him. He wasn't really even sure what the reports said about the films since I had placed the reports in the film sleeves. He just knew they were negative. For openers, he looked at me and said, "You don't have MS." I told him I thought he hadn't even looked at the films and at least he was honest enough to tell me I was right.
I said, "It's my age isn't it?" to which he responded that yes, very, very few people my age are diagnosed with MS and, having had symptoms for 5 years, that would mean that, since the textbooks say you should develop five new lesions each year, I should have 25 lesions by now. I felt like billing him the $400+ charge I incurred on converting my MRI CDs to film- but I knew he wouldn't pay it. Too many MDs today have this feeling of entitlement that enables them to behave with such arrogance and impunity. Oddly enough, he did agree that I had symptoms of MS!
Anyway, maybe he is right. I pulled out some films which I thought showed MS lesions and he told me, in each case, that those bright white markings were really reflections of my spine rather than lesions. Funny, none of the radiology books I had earlier consulted ever labeled bright spots as bone peaking through a spinal cord view. This was the first I had heard of it. But still, it got me thinking: Maybe I really just have ALS rather than MS.
So I went to an ALS support meeting last night, cried quietly for the first 20 minutes of the meeting, and then came around to the fact that most of the people in that room had ALS and they were darn brave about it - cracking jokes and seemingly actually very happy and engaging people! It was sobering when they read names of members of the group who had died since the previous meeting. Nevertheless, I plan to make an appointment with an ALS neuro here and try again, in a different direction, for an accurate and final diagnosis of what the #&*$^& is causing me all this misery!! I just have to know!!
Down and out (of hope),
WAF
I had such high hopes for this meeting. This neurologist was so highly estimed by others with MS. Even though my first meeting with him demonstrated a textbook-ruled, rigid mentality essentially not open to older folks being diagnosed with MS, I really thought that when he saw my films he would see the light. Ha, ha - the joke was on me.
This anal-retentive MS neuro has a strict rule about his patients' MRI films: They MUST be converted to film from the complementary CD given at the imaging facility (at a cost of $10 per sheet). Thus he gives the impression that he actually will READ those pricey films. In fact, as I was sitting in his waiting room for over an hour and a half beyond my appointment time, I thought, "Gee he must be using this time to review the 800+ shots on my films." I felt happy that he was actually doing what he implied he would. Silly, ever-optomistic me!
When I finally met with him it was quite apparent: There next to him was the big stack of heavy films I had lugged into his office - totally untouched by him. He wasn't really even sure what the reports said about the films since I had placed the reports in the film sleeves. He just knew they were negative. For openers, he looked at me and said, "You don't have MS." I told him I thought he hadn't even looked at the films and at least he was honest enough to tell me I was right.
I said, "It's my age isn't it?" to which he responded that yes, very, very few people my age are diagnosed with MS and, having had symptoms for 5 years, that would mean that, since the textbooks say you should develop five new lesions each year, I should have 25 lesions by now. I felt like billing him the $400+ charge I incurred on converting my MRI CDs to film- but I knew he wouldn't pay it. Too many MDs today have this feeling of entitlement that enables them to behave with such arrogance and impunity. Oddly enough, he did agree that I had symptoms of MS!
Anyway, maybe he is right. I pulled out some films which I thought showed MS lesions and he told me, in each case, that those bright white markings were really reflections of my spine rather than lesions. Funny, none of the radiology books I had earlier consulted ever labeled bright spots as bone peaking through a spinal cord view. This was the first I had heard of it. But still, it got me thinking: Maybe I really just have ALS rather than MS.
So I went to an ALS support meeting last night, cried quietly for the first 20 minutes of the meeting, and then came around to the fact that most of the people in that room had ALS and they were darn brave about it - cracking jokes and seemingly actually very happy and engaging people! It was sobering when they read names of members of the group who had died since the previous meeting. Nevertheless, I plan to make an appointment with an ALS neuro here and try again, in a different direction, for an accurate and final diagnosis of what the #&*$^& is causing me all this misery!! I just have to know!!
Down and out (of hope),
WAF
Good grief!!!!!!! What a nincompoop that neuro is!!!!!!! When I was talking with an MS nurse (30 years working with and studying MS) last week, I went through my entire history with her. She laughed when I told her my original neuro told me I was too old to have MS. (he hadn't looked at anything in my file yet) She told me that in all the time she has been working with people with MS, she has seen dozens and dozens of people present for the first time with MS symptoms over 60 and the same for people in their 70's and 80's. I'm going to do a post about that conversation because it went on for about an hour and we discussed neurologists for a good part of that time. Please don't give up exploring that MS possibility as it sounds to me it's time to dismiss that neuro and find a new one. Hugs, I've been there and know what it's like to be shuffled out the door, Charley
WAF--are you thinking of primary lateral sclerosis, or PLS? That's the "slow form" of ALS, one that can take about 3-5 years to get diagnosed, but like ALS, it's a motor neuron disease, with no sensory loss associated with it. (It is true that very rarely, someone with ALS survives for decades; Stephen Hawking is a clear example, but the disability score is still dramatic within a few years). PLS is actually one of my current differentials per my neuro, but one I've personally relegated to a "not" category because I have Lhermitte's, and that's not a PLS thing. Admittedly, what I do have is primarily motor and I have a lot of upper motor neuron signs (PLS is an upper motor neuron-only disease; ALS hits lower MNs, too, and can occur in types where one or the other prevails...). But...PPMS and PLS often can be confused with one another because of the motor characteristics of both and the lesser occurrence of sensory issues with PPMS onset.
Have you had *progressively* increasing motor issues, like weakness? With PLS, they'll start in either the legs, the arms, or with bulbar onset (emotions/face) and then progress throughout the body very slowly over time. With PPMS, they usually start in the legs, often asymmetrically.
Bio
Have you had *progressively* increasing motor issues, like weakness? With PLS, they'll start in either the legs, the arms, or with bulbar onset (emotions/face) and then progress throughout the body very slowly over time. With PPMS, they usually start in the legs, often asymmetrically.
Bio
Thanks so much for caring enough to respond! I value all your opinions!
Udkas I so agree that our MDs need to start listening to patients rather than practicing medicine by rigid sets of rules. I'm sorry about your friends with ALS. I'm at 5 years past onset of symptoms - yipes! Actually there is a slow form of ALS that many are unaware of. I knew someone who had it and it was very hard for her to get diagnosed. Some with ALS live 20 years, others 2 years or less. The ALS experience can be completely different for each person, just as MS can vary and is not the same experience in everyone who has it.
Karen 99: The neuro's PA was the one who examined me (on a prior visit). Then the neuro breezed into the room and did a cursory, sham-of-a-reflex exam - he went so fast, actually off target on many of the reflex points - I felt like a xylophone that he was playing. It was bizarre! On this second visit, after waiting and hour and a half for him (past my appointment time) he was in the room about 10 minutes and while I was still trying to tell him my symptoms he had already put on his head gear for the ministerial task of dictating my visit into his system. When finished, he stood up even though I was not through talking to him and he ended up walking out the door, leaving me sitting there.
SickMomma - Amen - I don't fit the cookie cutter mold - for one thing, my hair should be gray by now (due to age and from what I've gone through) but at 61.5 years of age, it's still its natural red!! I needed a blood patch but never ever had the required spinal tap headache!! Etc. You're right about their just passing those of us who don't fit their stereotypes on to other MDs.
Bob- I'm not giving up!! I'm still going to pursue a diagnosis - It still could be MS! I've definitely been feeling a "hug" along with my breathing issues.
Quix - I'm confused about the CD images being better than the films because on the CD it clearly states, "Not for diagnostic purposes." Why would it say that if they were better? Actually, the CD images do look clear to me.
Guitar grrrll: So true - not everyone's MS is the same! That is also true of other diseases.
Rigidity in medicine just is not a good idea: There's too much at stake!
Thanks, again, for all you support!
WAF
Udkas I so agree that our MDs need to start listening to patients rather than practicing medicine by rigid sets of rules. I'm sorry about your friends with ALS. I'm at 5 years past onset of symptoms - yipes! Actually there is a slow form of ALS that many are unaware of. I knew someone who had it and it was very hard for her to get diagnosed. Some with ALS live 20 years, others 2 years or less. The ALS experience can be completely different for each person, just as MS can vary and is not the same experience in everyone who has it.
Karen 99: The neuro's PA was the one who examined me (on a prior visit). Then the neuro breezed into the room and did a cursory, sham-of-a-reflex exam - he went so fast, actually off target on many of the reflex points - I felt like a xylophone that he was playing. It was bizarre! On this second visit, after waiting and hour and a half for him (past my appointment time) he was in the room about 10 minutes and while I was still trying to tell him my symptoms he had already put on his head gear for the ministerial task of dictating my visit into his system. When finished, he stood up even though I was not through talking to him and he ended up walking out the door, leaving me sitting there.
SickMomma - Amen - I don't fit the cookie cutter mold - for one thing, my hair should be gray by now (due to age and from what I've gone through) but at 61.5 years of age, it's still its natural red!! I needed a blood patch but never ever had the required spinal tap headache!! Etc. You're right about their just passing those of us who don't fit their stereotypes on to other MDs.
Bob- I'm not giving up!! I'm still going to pursue a diagnosis - It still could be MS! I've definitely been feeling a "hug" along with my breathing issues.
Quix - I'm confused about the CD images being better than the films because on the CD it clearly states, "Not for diagnostic purposes." Why would it say that if they were better? Actually, the CD images do look clear to me.
Guitar grrrll: So true - not everyone's MS is the same! That is also true of other diseases.
Rigidity in medicine just is not a good idea: There's too much at stake!
Thanks, again, for all you support!
WAF
I'm sorry to hear about your visit. I'm glad it wasn't me seeing that neuro, I get down right evil, when it comes to a doctor acting that way. I hope you can find the help you need!
Bob
Bob
Any doctor who does not look at the films or CD's themselves are not worth a dime.
Can you imagine an orthopedist NOT looking at the images themselves? A neurologist has to rely heavily on physical exam because other than an MRI there is no good way to see the brain.
Since this neuro did not review the films, I am curious about the physical exam he performed? Please tell. This is very important!
Also, did he indicate what he thought might be at the root of your symptoms? How much time did he spend with you?
BTW - I would be about 40 lesions short according to his calculations.
Can you imagine an orthopedist NOT looking at the images themselves? A neurologist has to rely heavily on physical exam because other than an MRI there is no good way to see the brain.
Since this neuro did not review the films, I am curious about the physical exam he performed? Please tell. This is very important!
Also, did he indicate what he thought might be at the root of your symptoms? How much time did he spend with you?
BTW - I would be about 40 lesions short according to his calculations.
Just a note. I guarantee that films are of inferior quality to the images on CD. That was my first tip-off to him also being inferior.
Inferior is as inferior does.
Q
Inferior is as inferior does.
Q
Grrr about that so-called big kahuna MS specialist!!
I think some docs only like the textbook cases. Those of us who are difficult to diagnose, who don't fit the cookie-cutter signs of a disease --- it's easier to just pass us on to someone else or tell us it's all in our heads.
I'm so sorry you went to such expense for a jerk who didn't even have the decency to LOOK at the films for you after requiring you make the prints.
Don't give up!!! There are decent, good MS specialists out there!! This guy's just a jerk - fuhgeddaboudit!
Seriously - there are answers out there, and not everybody's MS is the same.
Keep fighting,
Guitar_grrrl
Seriously - there are answers out there, and not everybody's MS is the same.
Keep fighting,
Guitar_grrrl
I have been unfortunate enough to know two friends with ALS, they are both dead now, both from symptoms to death were under 6 years but progression was fast. No numbness or sensory symptoms. I am not an expert but I hope this has eased your fears and not made them worse.
I am sorry that you had such a bad appointment when you held such high expectations. It must be disappointing.
As for MS, my friends aunty had her first attack of ON and then 20 years later she had her second attack of MS, both attack were big, the ON actually sent her blind and then the other one placed her in a wheelchair, I think because this was rare it was written up in a medical journal, there are exceptions to all rules and Drs are always learning and as MRI procedures improve they will learn more. What they need to learn is to "listen to their patients".
Udkas
I am sorry that you had such a bad appointment when you held such high expectations. It must be disappointing.
As for MS, my friends aunty had her first attack of ON and then 20 years later she had her second attack of MS, both attack were big, the ON actually sent her blind and then the other one placed her in a wheelchair, I think because this was rare it was written up in a medical journal, there are exceptions to all rules and Drs are always learning and as MRI procedures improve they will learn more. What they need to learn is to "listen to their patients".
Udkas
Thanks for the encouraging and reassuring words! I hope you're right about me!!
WAF
WAF
WAF...ALS is a purely motor disease, so you don't typically have numbness with it. And after five years, you'd be expected either to be dead or to have clear muscle wasting and major fasciculations. If you were at the "breathing issues" stage, you'd be near death at this point. Survival times in ALS are usually quite limited, something like 3-5 years. Your existence after five years with symptoms is pretty much a rule out of ALS. I hope that eases your fears somewhat.
While EMGs may not pick up early ALS, they usually are abnormal in ALS, with clear patterns of wave abnormality. Nothing you describe sounds like ALS. I've developed quite an expertise in motor neuron diseases, so if you have any questions for me, please fire away.
Bio
While EMGs may not pick up early ALS, they usually are abnormal in ALS, with clear patterns of wave abnormality. Nothing you describe sounds like ALS. I've developed quite an expertise in motor neuron diseases, so if you have any questions for me, please fire away.
Bio
HVAC, Quixotic1, bioham, shoshin, casrox, Amyloo, Lulu54,
Thank you so much for your support! It means so much to me! RIght now I'm totally frustrated . . and just flattened out! Don't know where to go from here. I will post my experience on the neurologist page, but they won't believe me because that neuro has lots of excellent reviews!!! I guess he might be okay if you're younger - and fit textbook guidelines. Maybe some MDs choosing MS prefer having mostly younger patients.
Quix - you made me laugh so hard!! It felt good! I couldn't have said it as well as you!
You're a stitch!! Thank you for caring!!! I never heard of "puppy dwawdle" - I've got to remember that one - love it!!I
Lulu - the reason I think it may be ALS is I'm in the prime age group for ALS - onset is usually in late 50s or early 60s (but can occur at any age). Also, ALS and MS share many, many of the same symptoms. Biowham, my symptoms are extreme weakness and fatigue, balance and gait issues, breathing issues, muscle cramping/stiffness, occasional numbness, visual blurring (I don't think ALS has visual blurring). However, a major difference is that with ALS MRIs will be negative and most ALS labs are negative. On paper, ALS patients look like the healthiest people on earth (except for one fatal flaw). So if my MRIs are truly negative, and my labs are negative, with my other symptoms, that points me toward where I don't want to be - ALS. I also have breathing issues - which MSers can also have but which are very common in ALS. In fact, that's what usually kills people with ALS - respiratory failure. I've been ruled out for ALS several times, but that can happen and you can still have it. From what I have been told, those little twinkie 50-minute nerve conduction studies/EMGs are not thorough enough to eliminate the possibility of ALS (and yet that is what they usually use). You actually need about a 3-hour EMG/nerve conduction test to really test most muscle groups and rule out ALS.
Again, thanks for your support - I love you all!!! And I want to be in the MS group!!
WAF
Thank you so much for your support! It means so much to me! RIght now I'm totally frustrated . . and just flattened out! Don't know where to go from here. I will post my experience on the neurologist page, but they won't believe me because that neuro has lots of excellent reviews!!! I guess he might be okay if you're younger - and fit textbook guidelines. Maybe some MDs choosing MS prefer having mostly younger patients.
Quix - you made me laugh so hard!! It felt good! I couldn't have said it as well as you!
You're a stitch!! Thank you for caring!!! I never heard of "puppy dwawdle" - I've got to remember that one - love it!!I
Lulu - the reason I think it may be ALS is I'm in the prime age group for ALS - onset is usually in late 50s or early 60s (but can occur at any age). Also, ALS and MS share many, many of the same symptoms. Biowham, my symptoms are extreme weakness and fatigue, balance and gait issues, breathing issues, muscle cramping/stiffness, occasional numbness, visual blurring (I don't think ALS has visual blurring). However, a major difference is that with ALS MRIs will be negative and most ALS labs are negative. On paper, ALS patients look like the healthiest people on earth (except for one fatal flaw). So if my MRIs are truly negative, and my labs are negative, with my other symptoms, that points me toward where I don't want to be - ALS. I also have breathing issues - which MSers can also have but which are very common in ALS. In fact, that's what usually kills people with ALS - respiratory failure. I've been ruled out for ALS several times, but that can happen and you can still have it. From what I have been told, those little twinkie 50-minute nerve conduction studies/EMGs are not thorough enough to eliminate the possibility of ALS (and yet that is what they usually use). You actually need about a 3-hour EMG/nerve conduction test to really test most muscle groups and rule out ALS.
Again, thanks for your support - I love you all!!! And I want to be in the MS group!!
WAF
oh my gosh, what an #$#%^%&. And I really mean that. You should send them the bill so someone at least sees the expense you went to preparing for him to b low you off like this.
There is no way to recover what it cost you emotionally to go through this lame exercise called an appointment.
One thing I would really like you to do is spend the time to find all those *rate your neuro* and *rate your doctor* websites and take the time to do an honest report on how you were treated. Perhaps you can save someone else all that grief and $$.
Is there a reason why you went from thinking MS to believing you have ALS?
Hang in there - answers have to be somewhere for you, but just not with this chump.
my best,
Lulu
There is no way to recover what it cost you emotionally to go through this lame exercise called an appointment.
One thing I would really like you to do is spend the time to find all those *rate your neuro* and *rate your doctor* websites and take the time to do an honest report on how you were treated. Perhaps you can save someone else all that grief and $$.
Is there a reason why you went from thinking MS to believing you have ALS?
Hang in there - answers have to be somewhere for you, but just not with this chump.
my best,
Lulu
I'm interested to know what the radiologist "impression" section reads. What did HE say about the "spinal shadows"?
This is outrageous! I sure hope you can find someone to listen to you and make the proper effort to find answers to what is wrong.
Try not to let this idiot discourage you...
Cass
Try not to let this idiot discourage you...
Cass
I'm so sorry you got such an idiot. I hope you will find a better neuro somehow.
sho
sho
Thank goodness for Quix. She saved me a ton of typing just then. What an *** (that doctor, I mean, not Quix. :-).)
I would bill him for the films. At least just for the fun of annoying the **** out of him.
That said, if you've had symptoms for 5 years, ALS is highly unlikely. I'm sorry I can't remember your symptoms...can you give a quick list here. I DO read all that you post, but I can't remember much of anything any more.
Bio
I would bill him for the films. At least just for the fun of annoying the **** out of him.
That said, if you've had symptoms for 5 years, ALS is highly unlikely. I'm sorry I can't remember your symptoms...can you give a quick list here. I DO read all that you post, but I can't remember much of anything any more.
Bio
<>
WTF??!!!!
Show me ONE text-book written within the last 10 years that says this. Perhaps this is a common rate "on average" but this is another one of "The Lies My Neurologist Told ME". What pure, unadulterated hog-wash! You did recognize this BS for what it was didn't you? MS does not follow any such set of rigid rules. What a nincompoop!! Oh, my! You can skewer this ignoramous for the Friday night weenie roast......Oh, words just fail me here.
Well, I am about 20 lesions behind now. I guess I must give up my diagnosis despite my growing hemiparesis, neurogenic bladder, hyperreflexia, positive LP, 6 spinal cord lesions, and positive OCT. Alas...
A rigid 5 lesions per year - not a lesion more not a lesion less.
Did you read the thread on This kind of puppy dwawdle?
http://www.medhelp.org/posts/Multiple-Sclerosis/Lies-My-Neuro-Told-Me-or-Common-MS-Myths/show/1074879
I also bumped it for others to read
Quix
WTF??!!!!
Show me ONE text-book written within the last 10 years that says this. Perhaps this is a common rate "on average" but this is another one of "The Lies My Neurologist Told ME". What pure, unadulterated hog-wash! You did recognize this BS for what it was didn't you? MS does not follow any such set of rigid rules. What a nincompoop!! Oh, my! You can skewer this ignoramous for the Friday night weenie roast......Oh, words just fail me here.
Well, I am about 20 lesions behind now. I guess I must give up my diagnosis despite my growing hemiparesis, neurogenic bladder, hyperreflexia, positive LP, 6 spinal cord lesions, and positive OCT. Alas...
A rigid 5 lesions per year - not a lesion more not a lesion less.
Did you read the thread on This kind of puppy dwawdle?
http://www.medhelp.org/posts/Multiple-Sclerosis/Lies-My-Neuro-Told-Me-or-Common-MS-Myths/show/1074879
I also bumped it for others to read
Quix
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