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"standard of care" in diagnosing MS
Qu... the perditrician - this is for you,
You are very intelligent and I love your art. I would like to ask you your opinion. I had the opposite problem most people have had. I was diagnosed too soon,( first 5 days of symptoms and same day I meet the neurologist.) I was treated with drugs that caused me great ill, lost my job, social support and health only to find that I was misdiagnosed with ms when I actually had had a brain stem stroke.
I never met the McDonald criteria as far as I can understand. - I had one lesion, negative spinal, my clinical signs were that of a stroke--- ( basically all symptoms of ms at the same time! ) I was never tested with evoked potential. My original mri showed an ill-defined area of enhancement at the sixth nerve nucleus, and there were also a few nonspecific periventricular white matter abnormanlities.
My yearly mri's showed decreased appearance of the small abnormality at the sixth nerve nucleus and no new lesions. I could go on but I bore myself. I want to know what the hell happened and how I can prevent this from happening to others.
I asked my new neuro -The brilliant Michael Olek- google him... how I was misdiagnosed, he said because I was thin, young and white in lived in Spokane. I feel for others that are living with the fear of the future when it is for not.
Please don't misunderstand, I have been given a blessing beyond my wildest dreams that I know others would possible tell me to "shut up and rejoice" but Im angry and I lost the job I loved and cant get it back. I know the orignial Neuro made a "mistake" but I want to get my facts straight before I speak with him.
thank you for any help you can offer. I would like to ask you more questions and specifics if you would be willing...
You are very intelligent and I love your art. I would like to ask you your opinion. I had the opposite problem most people have had. I was diagnosed too soon,( first 5 days of symptoms and same day I meet the neurologist.) I was treated with drugs that caused me great ill, lost my job, social support and health only to find that I was misdiagnosed with ms when I actually had had a brain stem stroke.
I never met the McDonald criteria as far as I can understand. - I had one lesion, negative spinal, my clinical signs were that of a stroke--- ( basically all symptoms of ms at the same time! ) I was never tested with evoked potential. My original mri showed an ill-defined area of enhancement at the sixth nerve nucleus, and there were also a few nonspecific periventricular white matter abnormanlities.
My yearly mri's showed decreased appearance of the small abnormality at the sixth nerve nucleus and no new lesions. I could go on but I bore myself. I want to know what the hell happened and how I can prevent this from happening to others.
I asked my new neuro -The brilliant Michael Olek- google him... how I was misdiagnosed, he said because I was thin, young and white in lived in Spokane. I feel for others that are living with the fear of the future when it is for not.
Please don't misunderstand, I have been given a blessing beyond my wildest dreams that I know others would possible tell me to "shut up and rejoice" but Im angry and I lost the job I loved and cant get it back. I know the orignial Neuro made a "mistake" but I want to get my facts straight before I speak with him.
thank you for any help you can offer. I would like to ask you more questions and specifics if you would be willing...
http://www.inlander.com/content/newscommentary_reports_spokanes_ms_multiple_sclerosis_rate_have_been_greatly_exaggerated
Thank you for your kind words. I want to be clear that it has always been possible to diagnose MS on clinical grounds. But, if this is done there should be clear evidence of TWO or more attacks, and also evidence of TWO or more areas of damage on the exam. From my reading you had only the one attack and only the evidence of a single problem in the brainstem. This would not have fulfilled ANY clinical requirement for the diagnosis of Definite MS. The MRI findings would back this up because there was only the one lesion in the brainstem. This correlated with your neurologic exam.
So, looking at what would have been needed for a definite diagnosis, you did not have it. Your situation was suggestive of MS, however and a strong argument could have been made to treat you with drugs as a Clinically Isolated Syndrome or CIS. Treating a CIS is recommended if the picture is suggestive enough, even though there is not enough evidence to make a diagnosis of Definite MS.
Personally, and I am not speaking as an expert, I believe that you should have been followed closely. As the lesion gradually improved, some consideration should have been given to the possibility that you did not have MS. Now, the purpose of the MS Drug is to stabilize the disease and, hopefully, to prevent or slow down further lesions and relapses. So the argument could be made that the improvement was just what they were hoping to see. It does paint a muddy picture.
So, all of this is just saying that from what you have told us they did NOT have enough evidence to make a definite diagnosis of MS. They may have been treating you as a person very likely to go on to develop MS in the next 10 years or so - a person with a Clinically Isolated Syndrome.
Your story reminds us of the harm that can be done if the worng diagnosis is pursued. This may be why so many neurologists hesitate when the data is not as compelling.
Now, as to whether this doctor's actions were complaint worthy. Definitely, if you feel that he did not expend enough time or energy to ensure that your diagnosis was correct, yes, you can file a complaint over this to the Washington Board of Medical Examiners. They will obtain your records and investigate the claim. Your new doctor can also file such a complaint if he feels the care you received was substandard.
As for a legal action of malpractice - Misdiagnosis - I don't know. You would have to be able to convince a jury that his assessment of you was not sufficiently supported by the evidence and that he did not follow recommended procedures in coming to the decision to treat you. For this you would have to seek legal counsel.
I pray your life continues to improve.
Quix
So, looking at what would have been needed for a definite diagnosis, you did not have it. Your situation was suggestive of MS, however and a strong argument could have been made to treat you with drugs as a Clinically Isolated Syndrome or CIS. Treating a CIS is recommended if the picture is suggestive enough, even though there is not enough evidence to make a diagnosis of Definite MS.
Personally, and I am not speaking as an expert, I believe that you should have been followed closely. As the lesion gradually improved, some consideration should have been given to the possibility that you did not have MS. Now, the purpose of the MS Drug is to stabilize the disease and, hopefully, to prevent or slow down further lesions and relapses. So the argument could be made that the improvement was just what they were hoping to see. It does paint a muddy picture.
So, all of this is just saying that from what you have told us they did NOT have enough evidence to make a definite diagnosis of MS. They may have been treating you as a person very likely to go on to develop MS in the next 10 years or so - a person with a Clinically Isolated Syndrome.
Your story reminds us of the harm that can be done if the worng diagnosis is pursued. This may be why so many neurologists hesitate when the data is not as compelling.
Now, as to whether this doctor's actions were complaint worthy. Definitely, if you feel that he did not expend enough time or energy to ensure that your diagnosis was correct, yes, you can file a complaint over this to the Washington Board of Medical Examiners. They will obtain your records and investigate the claim. Your new doctor can also file such a complaint if he feels the care you received was substandard.
As for a legal action of malpractice - Misdiagnosis - I don't know. You would have to be able to convince a jury that his assessment of you was not sufficiently supported by the evidence and that he did not follow recommended procedures in coming to the decision to treat you. For this you would have to seek legal counsel.
I pray your life continues to improve.
Quix
You are an amazing gift to all of us. Thank you for your objective, straight forward understanding and knowledge. I am making my way through your diagnosis information and will respond when I have evaluated my situation more clearly. Heather
This is the last post from Misdiagnosed. I had to take out the actual doctors' names.
****
To: Quix
Thank you for the fast response. I was diagnosed with multiple sclerosis Dec 7, 2003 and correctly rediagnosed on May 29, 2008. I was a high school teacher and adjunct prof at GU. I loved my jobs. I went to the hospital having vertigo, double vision, mental confusion. As I said I only had the one mri abnormality ever, which I now feel was a stroke. I was in bed for 2 months. I developed a constant no-no tremor of the head and shoulders five days after starting Copaxone which original Dr. H said was another episode of ms. I stayed on copaxone because he said It was working because in the 4 years I never had more lesions.
Do you know what it is like have people stare and constantly ask if I am cold or think I am saying no all the time or on meth? I was embarrassed to go out and couln't function around people. I feared my husband would leave me and it devastated my children's childhood.
This past spring Dr. O told me to go off Copaxone, I am continuing to experience an amazing flow of health. Five weeks after stopping the drug, 95 percent of the tremors STOPPED. My mental depression lifted, my slurred speech improved and my energy is so much better. And I gained ten pounds.
I used to lay in bed all but 5 hours a day choosing to drive my girls to school or go grocery shopping for my big days out.
Yes, I know I sound unappreciative of my new diagnosis. I TRUELY am so so thankful I do not have ms. I never thought life was fair but I want to know what the hell happened so I can warn people.
From the stroke, I now have constant head to toe, left side numbness, I slur my words and tremor when Im tired each evening. I went to stroke rehab, but being 4.5 years after the stroke, it's a bit late and I have not improved.
I am trying to go back to college to get my teaching certificate back but my brain is easily fatigued and I still get confused. This I attribute to age also but I feel the copaxone messed me up. There doesn't seem to be any independent literature to prove this but I now trust no one. What happens to the body when you inject a progressive neurological disease modifing drug for 4.5 years?
I feel I should have never been diagnosed. I did not meet the Mcdonald criteria but from your info it would still be acceptable to be diagnosed on just clinical presentation alone? I know drug companies have spent tens of millions to provide studies of the benifits of earlier and earlier **************. Copaxone even launched a study to double the medicine. I am suspicious of the money making greed of many pharma companies.
Im tired and sick of myself. I just want to understand. I guess I should have known but Im not a neuro and I want to know if this doctor's actions are complaint worthy or if he was just incompetent with me.
Misdiagnosed
****
To: Quix
Thank you for the fast response. I was diagnosed with multiple sclerosis Dec 7, 2003 and correctly rediagnosed on May 29, 2008. I was a high school teacher and adjunct prof at GU. I loved my jobs. I went to the hospital having vertigo, double vision, mental confusion. As I said I only had the one mri abnormality ever, which I now feel was a stroke. I was in bed for 2 months. I developed a constant no-no tremor of the head and shoulders five days after starting Copaxone which original Dr. H said was another episode of ms. I stayed on copaxone because he said It was working because in the 4 years I never had more lesions.
Do you know what it is like have people stare and constantly ask if I am cold or think I am saying no all the time or on meth? I was embarrassed to go out and couln't function around people. I feared my husband would leave me and it devastated my children's childhood.
This past spring Dr. O told me to go off Copaxone, I am continuing to experience an amazing flow of health. Five weeks after stopping the drug, 95 percent of the tremors STOPPED. My mental depression lifted, my slurred speech improved and my energy is so much better. And I gained ten pounds.
I used to lay in bed all but 5 hours a day choosing to drive my girls to school or go grocery shopping for my big days out.
Yes, I know I sound unappreciative of my new diagnosis. I TRUELY am so so thankful I do not have ms. I never thought life was fair but I want to know what the hell happened so I can warn people.
From the stroke, I now have constant head to toe, left side numbness, I slur my words and tremor when Im tired each evening. I went to stroke rehab, but being 4.5 years after the stroke, it's a bit late and I have not improved.
I am trying to go back to college to get my teaching certificate back but my brain is easily fatigued and I still get confused. This I attribute to age also but I feel the copaxone messed me up. There doesn't seem to be any independent literature to prove this but I now trust no one. What happens to the body when you inject a progressive neurological disease modifing drug for 4.5 years?
I feel I should have never been diagnosed. I did not meet the Mcdonald criteria but from your info it would still be acceptable to be diagnosed on just clinical presentation alone? I know drug companies have spent tens of millions to provide studies of the benifits of earlier and earlier **************. Copaxone even launched a study to double the medicine. I am suspicious of the money making greed of many pharma companies.
Im tired and sick of myself. I just want to understand. I guess I should have known but Im not a neuro and I want to know if this doctor's actions are complaint worthy or if he was just incompetent with me.
Misdiagnosed
Hi, What a tragedy and a relief all at the same time! My heart goes out to you to have lost so much.
It's a little hard to answer your question. The Standard of Care in making the diagnosis depends on when you were diagnosed. In reading your post it sounds like you were diagnosed 10 or 15 years ago. If that is the situation, then neurologist were working under the Poser Criteria for diagnosis and the McDonald Criteria would not apply. They were formulated in 2001 and revised in 2005.
I can see that you never had a repeat attack and that your repeat MRI's showed only improvement. This is not consistent with RRMS. But, even the early criteria were very clear that a person had to have had 2 attacks and lesions indicating damage in at least 2 different places in the central nervous system. This is know as "Dissemination in Space and Time." You clearly did not have these. So making the diagnosis so firmly and never re-evaluating it was careless and poor medicine. I can see why it might have been a suspicion in the beginning, but you didn't have enough (from what you told us) to make it any kind of definite diagnosis.
I wrote 2 Health Pages which are very long (sorry), but they do spell out what doctors have had to deal with to make the diagnosis of MS over the last 40 years. I do recommend that everyone take the time to read them. Soo many questions would be answered.
The first deals with the criteria which doctors diagnosed by from the mid-1960's until 2001.
"The History of the Diagnosis of MS"
The second, really describes what current doctors must consider in making a diagnosis of MS:
"Diagnosing MS - The McDonald Criteria (revised 2005)"
This will show you how far off your doctor was from the "Standard of Care" in making the firm diagnosis of MS on the basis of one attack and one area of lesion - and then never re-evaluating it.
I hope this is helpful, but also remember I am not an expert that can be quoted or relied on. I write as accurately as I can, but....you get the point.
Stay with us. You provide a wonderful warning not to jump too quickly to the diagnosis when all the more reasonalbe alternatives have not been ruled out. Besides we're nice people and make great friends.
Quix
It's a little hard to answer your question. The Standard of Care in making the diagnosis depends on when you were diagnosed. In reading your post it sounds like you were diagnosed 10 or 15 years ago. If that is the situation, then neurologist were working under the Poser Criteria for diagnosis and the McDonald Criteria would not apply. They were formulated in 2001 and revised in 2005.
I can see that you never had a repeat attack and that your repeat MRI's showed only improvement. This is not consistent with RRMS. But, even the early criteria were very clear that a person had to have had 2 attacks and lesions indicating damage in at least 2 different places in the central nervous system. This is know as "Dissemination in Space and Time." You clearly did not have these. So making the diagnosis so firmly and never re-evaluating it was careless and poor medicine. I can see why it might have been a suspicion in the beginning, but you didn't have enough (from what you told us) to make it any kind of definite diagnosis.
I wrote 2 Health Pages which are very long (sorry), but they do spell out what doctors have had to deal with to make the diagnosis of MS over the last 40 years. I do recommend that everyone take the time to read them. Soo many questions would be answered.
The first deals with the criteria which doctors diagnosed by from the mid-1960's until 2001.
"The History of the Diagnosis of MS"
The second, really describes what current doctors must consider in making a diagnosis of MS:
"Diagnosing MS - The McDonald Criteria (revised 2005)"
This will show you how far off your doctor was from the "Standard of Care" in making the firm diagnosis of MS on the basis of one attack and one area of lesion - and then never re-evaluating it.
I hope this is helpful, but also remember I am not an expert that can be quoted or relied on. I write as accurately as I can, but....you get the point.
Stay with us. You provide a wonderful warning not to jump too quickly to the diagnosis when all the more reasonalbe alternatives have not been ruled out. Besides we're nice people and make great friends.
Quix
HI there,
Hope you don't mind me popping in here since you addressed this to Quix.
I'm so sorry to hear about your misdiagnosis. I understand why you would be angry at this. It does happen. Even with me, my 2nd Neuro said 99% chance MS, just incase something came along in my future to change it.
All I can say is that Neuro's have to be so very thorough with their testing to rule out everything other than MS. It's a lengthy process and one I think didn't happen in your case, and I'm so sorry. MRIs or other imaging should have shown what happened, but they didn't.
If it were me (and it's not me so this will be easier said than done), you have got to go from here. You'll not be able to get back some particulars that you lost, but you certainly have every right to ask them questions. Bring in the criteria, etc., if it will gives you piece of mind. You deserve this.
How are you feeling now? Has this stroke left you w/many limitations?
Again, so sorry, hope you find some comfort here with us.
be well,
Shell
Hope you don't mind me popping in here since you addressed this to Quix.
I'm so sorry to hear about your misdiagnosis. I understand why you would be angry at this. It does happen. Even with me, my 2nd Neuro said 99% chance MS, just incase something came along in my future to change it.
All I can say is that Neuro's have to be so very thorough with their testing to rule out everything other than MS. It's a lengthy process and one I think didn't happen in your case, and I'm so sorry. MRIs or other imaging should have shown what happened, but they didn't.
If it were me (and it's not me so this will be easier said than done), you have got to go from here. You'll not be able to get back some particulars that you lost, but you certainly have every right to ask them questions. Bring in the criteria, etc., if it will gives you piece of mind. You deserve this.
How are you feeling now? Has this stroke left you w/many limitations?
Again, so sorry, hope you find some comfort here with us.
be well,
Shell
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