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A Tincture of Time- When The Tests Are Negative
A continuing question on the forum is "Does this sound like MS?" or "My LP or MRI was negative so I don't have MS." The anxiety surrounding these questions is well understood and appreciated especially by someone like me who waited 5 years for a definitive diagnosis.
My neurologist DID treat my symptoms such as the tingling extremities and pain I experienced, using many of the same meds as I use now. The key to this MS puzzle is patience.
Patience is extremely hard when you are scared, worried or fearful for your future. That doesn't even begin to take into account the all the testing done only to be told the test was negative. It is truly disheartening. I can personally attest to this repeated disappointment despite increasing symptoms. Along with the negative tests comes resentment as you pay for tests that got your hopes up and then dashed them. We have several on the forum who are currently in the diagnosing stage and it IS hard! As I said, I know and remembering vividly those stressful days.
I was led by Shelly to an excellent blog written by neurologist Jonathan Howard,MD entitled Perspectives in MS. One of the entries is called "A Tincture of Time"
A Tincture of Time
by Jonathan Howard, MD
Feb 14, 2012
One of the most frequent e-mail questions I have received is from someone describing their symptoms and wondering whether or not these symptoms could be due to MS. This, of course, is a common reason for patients to visit an MS Center as well. Given that MS affects the central nervous system, which controls almost everything we do, almost any neurological symptom could be due to MS. I have already discussed the diagnostic criteria for MS as defined by the 2010 McDonald Criteria and written in further detail about the use of the MRI and lumbar puncture results in diagnosing MS. Unfortunately, often times doctors and patients alike are left in an uncertain state even after these tests are done, especially if there is some equivocal finding on the MRI.
Let me then discuss part of the McDonald criteria that does not receive much attention. This is the part that says in certain patients, in order to diagnosis MS, one should simply “await a second clinical attack.” For many people, being advised to “wait and see” what happens is not a satisfactory answer. Patients come to a doctor with a symptom and understandably desire a diagnosis and treatment. Unfortunately, this is not always possible, and sometimes the best thing a doctor can do is observe a patient over time and see what happens. Simply waiting can be a powerful diagnostic tool. One of my professors in medical school would routinely prescribe a “tincture of time” to help figure out what was wrong with his patients.
If someone believes they have MS and their doctor does not feel that have MS or is unsure of this diagnosis, simply waiting will reveal the diagnosis. Patients with relapsing-remitting MS will eventually go on to have additional relapses, while patients without MS won’t. Additionally, the MRI of patients with MS will eventually show lesions consistent with the illness, so repeating the MRI after a certain amount of time has elapsed is never a bad idea in cases where the diagnosis is not clear.
Patients who are told to wait until time clarifies the diagnosis should know that in almost all such cases, a delay in starting medications will not affect long-term disability. In all but the most severe cases of MS (and certainly in those patients in whom the diagnosis is initially in doubt) disability in MS occurs over years to decades. It is true that most neurologists suggest starting a medication as soon as demyelinating disease is diagnosed, even in patients who do not meet the formal criteria for MS. However, subjecting a patient to unpleasant, expensive, and sometimes dangerous medications to treat an illness they do not have is a mistake that should be avoided when possible.
Published by: healthline exclusive
http://www.healthline.com/health-blogs/perspectives-in-ms/tincture-of-time
I hope this blog will help with some of the questions and the line of thinking neurologists have. Once you are on the above link you may find other blog entries that answer one of your many questions. We are always here to help answer questions you have and support you in anyway we can.
Ren
My neurologist DID treat my symptoms such as the tingling extremities and pain I experienced, using many of the same meds as I use now. The key to this MS puzzle is patience.
Patience is extremely hard when you are scared, worried or fearful for your future. That doesn't even begin to take into account the all the testing done only to be told the test was negative. It is truly disheartening. I can personally attest to this repeated disappointment despite increasing symptoms. Along with the negative tests comes resentment as you pay for tests that got your hopes up and then dashed them. We have several on the forum who are currently in the diagnosing stage and it IS hard! As I said, I know and remembering vividly those stressful days.
I was led by Shelly to an excellent blog written by neurologist Jonathan Howard,MD entitled Perspectives in MS. One of the entries is called "A Tincture of Time"
A Tincture of Time
by Jonathan Howard, MD
Feb 14, 2012
One of the most frequent e-mail questions I have received is from someone describing their symptoms and wondering whether or not these symptoms could be due to MS. This, of course, is a common reason for patients to visit an MS Center as well. Given that MS affects the central nervous system, which controls almost everything we do, almost any neurological symptom could be due to MS. I have already discussed the diagnostic criteria for MS as defined by the 2010 McDonald Criteria and written in further detail about the use of the MRI and lumbar puncture results in diagnosing MS. Unfortunately, often times doctors and patients alike are left in an uncertain state even after these tests are done, especially if there is some equivocal finding on the MRI.
Let me then discuss part of the McDonald criteria that does not receive much attention. This is the part that says in certain patients, in order to diagnosis MS, one should simply “await a second clinical attack.” For many people, being advised to “wait and see” what happens is not a satisfactory answer. Patients come to a doctor with a symptom and understandably desire a diagnosis and treatment. Unfortunately, this is not always possible, and sometimes the best thing a doctor can do is observe a patient over time and see what happens. Simply waiting can be a powerful diagnostic tool. One of my professors in medical school would routinely prescribe a “tincture of time” to help figure out what was wrong with his patients.
If someone believes they have MS and their doctor does not feel that have MS or is unsure of this diagnosis, simply waiting will reveal the diagnosis. Patients with relapsing-remitting MS will eventually go on to have additional relapses, while patients without MS won’t. Additionally, the MRI of patients with MS will eventually show lesions consistent with the illness, so repeating the MRI after a certain amount of time has elapsed is never a bad idea in cases where the diagnosis is not clear.
Patients who are told to wait until time clarifies the diagnosis should know that in almost all such cases, a delay in starting medications will not affect long-term disability. In all but the most severe cases of MS (and certainly in those patients in whom the diagnosis is initially in doubt) disability in MS occurs over years to decades. It is true that most neurologists suggest starting a medication as soon as demyelinating disease is diagnosed, even in patients who do not meet the formal criteria for MS. However, subjecting a patient to unpleasant, expensive, and sometimes dangerous medications to treat an illness they do not have is a mistake that should be avoided when possible.
Published by: healthline exclusive
http://www.healthline.com/health-blogs/perspectives-in-ms/tincture-of-time
I hope this blog will help with some of the questions and the line of thinking neurologists have. Once you are on the above link you may find other blog entries that answer one of your many questions. We are always here to help answer questions you have and support you in anyway we can.
Ren
I did not say it was off limits jj
I just made a comment which was opposite your view of anger
See pm
I just made a comment which was opposite your view of anger
See pm
COMMUNITY LEADER
Considering 'anger' is off topic and not related to the thread 'A tincture of time', any further comments relating to soley off topic commentary, will do nothing to add to this important thread. Please try to keep comments topic related, positive or negative eliments add to the subject matter being discussed. Any soley off topic input actually does, even if it is not the intention, distract from the purpose of the thread and can lead to others avoidance and the thread being prematurely shut down.
Your points are actually valid and they would make a good thread of their own! Anger issues is probably a good thread to put up for discussion, if your want to continue on this topic please start a new thread. :o)
Cheers.........JJ
Your points are actually valid and they would make a good thread of their own! Anger issues is probably a good thread to put up for discussion, if your want to continue on this topic please start a new thread. :o)
Cheers.........JJ
It has been an interesting thread but there is always another side to anger, it is powerful and does have a good side. It can evoke powerful emotions to carry people through, energy to get things done, the courage to do things, etc.
While it is true that more than less, it evokes bad things, the flip side is that it also accomplishes good things. I can think of several times in my own life that anger carried me thru some difficult times and allowed me to do things (or so I thought) that I would not have done or been able to do.
Not taking away from Ren's thread, it has been a good one.
While it is true that more than less, it evokes bad things, the flip side is that it also accomplishes good things. I can think of several times in my own life that anger carried me thru some difficult times and allowed me to do things (or so I thought) that I would not have done or been able to do.
Not taking away from Ren's thread, it has been a good one.
COMMUNITY LEADER
Ren what typos, I see nudding! lol
I can think of a couple of ladies that have had their dx of MS revoked, years after their dx, meds etc i wonder what if any dx ever eventuated, just what happened to them besides limbo land? I can also think of one or two, who were suspected of having MS for years and ended dx with rarer conditions.
Its a point well made really, at the end of the day, the 'correct' dx is what you want, the 'correct' medications and treatment plan is what you want because getting misdiagnosed with MS would have to be as bad or worse than not getting dx with MS when thats what you have.
Cheers.........JJ
PS Anger is such a self destructive emotion, helps no one!
I can think of a couple of ladies that have had their dx of MS revoked, years after their dx, meds etc i wonder what if any dx ever eventuated, just what happened to them besides limbo land? I can also think of one or two, who were suspected of having MS for years and ended dx with rarer conditions.
Its a point well made really, at the end of the day, the 'correct' dx is what you want, the 'correct' medications and treatment plan is what you want because getting misdiagnosed with MS would have to be as bad or worse than not getting dx with MS when thats what you have.
Cheers.........JJ
PS Anger is such a self destructive emotion, helps no one!
Sorry for the typos! I forgot to reread before posting...sorry (red faced embarrassment)
Ren
Ren
As I read the above responses I feel as if the article "Tincture of Time" only served to upset some of you. It was NOT meant to do that but to help you understand one neuro's view on the the situation.
Everyone is entitled to their opinion an everyone's opinions are based on one's life experiences. So, it is easy to see where some thought that the blog entry was helpful whole others were resentful.
As noted in my initial post, Dr. Howard has a series of blog entries on Healthline and some are quite enlightening. This is what I thought of the "Tincture of Time " entry. That entry made perfect sense to me and I was one of those who underwent 5+ years of testing and waiting. Now, I understand some of the thinking of the neuros and doctors I went to.
I understand those who were not treated or mistreated by doctors, but to borrow a popular song lyric, one bad apple apple doesn't spoil the whole bunch. Some people are lucky in that they find the perfect neuro the first time around or their PCP is a great advocate for them but then there is the rest of us.
From another blog of Dr. Howards' "Relying on Tests to Diagnose MS, Part Two:
"But it is important that doctors are as careful as possible before they diagnosis a patient with MS.
Patients who do receive such a diagnosis of MS are often understandably emotionally devastated, at least initially. Many feel forced to reevaluate their lives in significant ways.
Most newly diagnosed patients are started on lifelong medicines that are expensive and can have a serious impact on their lives. I have seen patients, whom I don’t think have MS, receive powerful medications with potentially fatal consequences such as Tysabri.
In fact, one of the patients who died in the initial studies of Tysabri was found on autopsy not to have MS. Moreover, it would be a mistake to diagnosis a patient with MS, if they had a different illness that required different treatment. I have seen other illness that mimic MS go untreated until they are properly identified.
Additionally, I have had the experience a handful of times in my career, of having to “undiagnose” a patient with MS in light of new evidence. Several of these patients had been taking medications for MS for many years, and MS had become an important part of their identity. While some of these patients are relieved to have been “cured,” many were understandably confused and upset.
Doctors are certainly far from perfect in diagnosing MS, and invariably there will be cases where cases where patients are misdiagnosed even when all the appropriate tests are ordered. However, I hope I have provided a clearer explanation as to why doctors so heavily reliant on the MRI and lab tests to diagnosis MS." (paragraphs separated for easier reading)
I have no idea if this second post will put more fuel on the fire of those who are angry and upset but it is another unique opportunity to view how doctors approach their patients and how they or why diagnose or not.
Please continue to comment as I think this is an important topic...if or when you get diagnosed and possible reasons why.
Ren
Everyone is entitled to their opinion an everyone's opinions are based on one's life experiences. So, it is easy to see where some thought that the blog entry was helpful whole others were resentful.
As noted in my initial post, Dr. Howard has a series of blog entries on Healthline and some are quite enlightening. This is what I thought of the "Tincture of Time " entry. That entry made perfect sense to me and I was one of those who underwent 5+ years of testing and waiting. Now, I understand some of the thinking of the neuros and doctors I went to.
I understand those who were not treated or mistreated by doctors, but to borrow a popular song lyric, one bad apple apple doesn't spoil the whole bunch. Some people are lucky in that they find the perfect neuro the first time around or their PCP is a great advocate for them but then there is the rest of us.
From another blog of Dr. Howards' "Relying on Tests to Diagnose MS, Part Two:
"But it is important that doctors are as careful as possible before they diagnosis a patient with MS.
Patients who do receive such a diagnosis of MS are often understandably emotionally devastated, at least initially. Many feel forced to reevaluate their lives in significant ways.
Most newly diagnosed patients are started on lifelong medicines that are expensive and can have a serious impact on their lives. I have seen patients, whom I don’t think have MS, receive powerful medications with potentially fatal consequences such as Tysabri.
In fact, one of the patients who died in the initial studies of Tysabri was found on autopsy not to have MS. Moreover, it would be a mistake to diagnosis a patient with MS, if they had a different illness that required different treatment. I have seen other illness that mimic MS go untreated until they are properly identified.
Additionally, I have had the experience a handful of times in my career, of having to “undiagnose” a patient with MS in light of new evidence. Several of these patients had been taking medications for MS for many years, and MS had become an important part of their identity. While some of these patients are relieved to have been “cured,” many were understandably confused and upset.
Doctors are certainly far from perfect in diagnosing MS, and invariably there will be cases where cases where patients are misdiagnosed even when all the appropriate tests are ordered. However, I hope I have provided a clearer explanation as to why doctors so heavily reliant on the MRI and lab tests to diagnosis MS." (paragraphs separated for easier reading)
I have no idea if this second post will put more fuel on the fire of those who are angry and upset but it is another unique opportunity to view how doctors approach their patients and how they or why diagnose or not.
Please continue to comment as I think this is an important topic...if or when you get diagnosed and possible reasons why.
Ren
Excellent post, Ren!!
Like everything else in life, your results may vary. We can only be our own best advocates, and we persevere until we get answers. Sometimes, that can take a long time.
Like everything else in life, your results may vary. We can only be our own best advocates, and we persevere until we get answers. Sometimes, that can take a long time.
It is unfortunate.
We have many undx'd that visit our forum for information. That write-up is solid, and while it doesn't capture every scenario (how could it with MS? We are all different) it was meant to help those "undx'd" Rather than sending them all over the the limboland forum over and over again. It's what we do to help.
We've always been made up of the dx'd, the misdx'd, the differential dx'd.
I know for certain this "one" piece of facts was meant to provide perspective of how and why it "is what it is" sometimes.
I still hope it helps those who are in the wait and see to understand why it's 1) important to know for certain the process that is occurring in their CNS and 2) it's just not an easy dx to make (for the very reason you point out Sarah, and 3) they may not be getting diss'd, rather there may need be more time to identify the true culprit.
Take it for what it is please, and that is...One "possible" piece to someone's "why am I not dx'd question." There can be many "whys" and this is one of them.
We have many undx'd that visit our forum for information. That write-up is solid, and while it doesn't capture every scenario (how could it with MS? We are all different) it was meant to help those "undx'd" Rather than sending them all over the the limboland forum over and over again. It's what we do to help.
We've always been made up of the dx'd, the misdx'd, the differential dx'd.
I know for certain this "one" piece of facts was meant to provide perspective of how and why it "is what it is" sometimes.
I still hope it helps those who are in the wait and see to understand why it's 1) important to know for certain the process that is occurring in their CNS and 2) it's just not an easy dx to make (for the very reason you point out Sarah, and 3) they may not be getting diss'd, rather there may need be more time to identify the true culprit.
Take it for what it is please, and that is...One "possible" piece to someone's "why am I not dx'd question." There can be many "whys" and this is one of them.
Unfortunately I think this thread has strayed either from becoming too personal or everyone wanting to defend their contribution instead of just posting and letting the chips fall where they may
Just my observation, going back under my rock!
Just my observation, going back under my rock!
COMMUNITY LEADER
I dont think focusing on the exceptional cases is a good idea, no one is forgetting that there are such cases, thats not really what this is about, it's the "almost all" or the typical and not the rarer cases that this is aimed at.
"Patients who are told to wait until time clarifies the diagnosis should know that in almost all such cases, a delay in starting medications will not affect long-term disability. In all but the most severe cases of MS (and certainly in those patients in whom the diagnosis is initially in doubt) disability in MS occurs over years to decades."
People are not, on average waiting 5 - 10 years to get a dx, yes it happens but it just isn't the most common situation and thats something people who are waiting, should probably keep in mind more than thinking about the exceptional situations. (imho)
Cheers.......JJ
"Patients who are told to wait until time clarifies the diagnosis should know that in almost all such cases, a delay in starting medications will not affect long-term disability. In all but the most severe cases of MS (and certainly in those patients in whom the diagnosis is initially in doubt) disability in MS occurs over years to decades."
People are not, on average waiting 5 - 10 years to get a dx, yes it happens but it just isn't the most common situation and thats something people who are waiting, should probably keep in mind more than thinking about the exceptional situations. (imho)
Cheers.......JJ
This is all very good, but it's important to also note that there are still patients who do not fit into any of these scenarios.
Time will diagnose some patients with MS. Others will be found to have mimics, as pointed out. Patients will get second, third, fourth opinions and find a good doc who figures things out.
Then there are those.... to whom none of those things happen. Mimics all ruled out, from autoimmune diseases to psychological diseases. MS never becomes obvious either. Multiple opinions and MRIs lead to a dead end. And in some cases (like mine) no spinal tap is obtainable to help rule MS in or out.
And yet... the symptoms remain, they keep coming back, things still go downhill.
All the information posted here is true and helpful, but it just doesn't cover all cases.
Patience is admirable and necessary, but the idea that in 5 or even 10 years a person will necessarily get a diagnosis (of something or other) for their symptoms and problems is NOT always true. It's not always a matter of just waiting long enough. Sometimes it just never happens, and that is the truth, too.
I don't mean to discourage anyone. Just providing another perspective that is often overlooked--by doctors as well. The formula outlined above (wait, be patient, keep searching) sounds very reasonable, but it does not cover all cases and no one seems to admit this. NOT EVERYONE WILL BE DIAGNOSED with something, even over long periods of time. The answers are not always there, no matter how long you "wait." That's life.
Time will diagnose some patients with MS. Others will be found to have mimics, as pointed out. Patients will get second, third, fourth opinions and find a good doc who figures things out.
Then there are those.... to whom none of those things happen. Mimics all ruled out, from autoimmune diseases to psychological diseases. MS never becomes obvious either. Multiple opinions and MRIs lead to a dead end. And in some cases (like mine) no spinal tap is obtainable to help rule MS in or out.
And yet... the symptoms remain, they keep coming back, things still go downhill.
All the information posted here is true and helpful, but it just doesn't cover all cases.
Patience is admirable and necessary, but the idea that in 5 or even 10 years a person will necessarily get a diagnosis (of something or other) for their symptoms and problems is NOT always true. It's not always a matter of just waiting long enough. Sometimes it just never happens, and that is the truth, too.
I don't mean to discourage anyone. Just providing another perspective that is often overlooked--by doctors as well. The formula outlined above (wait, be patient, keep searching) sounds very reasonable, but it does not cover all cases and no one seems to admit this. NOT EVERYONE WILL BE DIAGNOSED with something, even over long periods of time. The answers are not always there, no matter how long you "wait." That's life.
Jane said, "The more we can make the advocating process a cooperative one rather than an adversarial one, the better for us as patients."
And followed with, "Playing the waiting game doesn't always means your neuro is 'bad', and having just any old neuro doesn't always mean you'll get the diagnosis at the right time."
You bring things together with lasar precision and focus woman. Amazing.
I think you will never be a candidate in our chapter of On-And-On ANON.
Thanks Jane.
And thank you too Ren for sharing this and inspiring all those responding. I hope this subject gets lots of view time.
Mary
And followed with, "Playing the waiting game doesn't always means your neuro is 'bad', and having just any old neuro doesn't always mean you'll get the diagnosis at the right time."
You bring things together with lasar precision and focus woman. Amazing.
I think you will never be a candidate in our chapter of On-And-On ANON.
Thanks Jane.
And thank you too Ren for sharing this and inspiring all those responding. I hope this subject gets lots of view time.
Mary
COMMUNITY LEADER
I think that basically the point is that, in 'most' cases the wait and see aproach is very appropriate when there isn't quite enough 'diagnostic evidence' to make a clear and acurate dx. Its a totally different ball game when you see a neuro who dismisses the evidence or doesn't recognise the evidence of MS or fails to look for evidence, totally different!
To be honest, I really agree with the principle of wait and see, I had the idea that one day the clinical and diagnostic evidence will be so obviously clear, that my dx will logically be made official, I just had to gather all the evidence possible first and so thats what i did. I was actually better off, taking a break from the whole finding a neuro that knew MS, which was my issue. I didn't have enough mental or physical strength left, i needed that to work on changing what could, but the dx, the dx was not as important as ME!
I've really not got much else to loose, a bit but not much, i'm not being meladramatic just simply stating the facts. I know my big bang in 09 changed everything for me, each relapse since has sealed the deal and i know nothings going to fix that now because i've tried and tried, its just too late, the window for DMD's is surely closed for me now.
I work my @$$ off and I will continue to do so, thats never going to change, thats just a part of me,but i am also a realist. DMD's are not going to fix what i've got thats damaged anyway, the hope is to slow it down not fix, its one component in any treatment plan, granted a very important one but there is still a lot of work that also needs doing if any rewiring is going to happen, i cant stop believing in that.
Its taken decades to be as i am now, i do have enough diagnostic evidence and Dr's who 100% believe there is no other possible explanation though its yet to be made official by a neuro but seriously, what i've experienced is NOT the usual. I very strongly believe in getting second opinions, especially if you have a lot of diagnostic evidence that puts you in the 'probable MS' catagory, seeing a neuro who specialises in MS is only ever going to be in your best interest!
So what if you dont have the lesions on your MRI's, or the clinical signs of or test results that point in the direction of MS, its in those situations that i strongly believe if you have nothing pointing in the direction of MS, then its in your best interest to look at its mimics. Its also in your best interest to put MS on the back burner, to refocus your thoughts and direction. There is nothing stopping you from doing what ever is necessary to get fit and as healthy as you should be, you can be doing that and more, you'll also need to do that anyway so whats the harm.
The simple truth is that waiting for more clinical evidence just makes perfect sense if there isn't enough to dx, the goal is to get the correct dx, right?!
Cheers........JJ
[paid up memeber of our andonandonandon club, another novel by moi lol]
To be honest, I really agree with the principle of wait and see, I had the idea that one day the clinical and diagnostic evidence will be so obviously clear, that my dx will logically be made official, I just had to gather all the evidence possible first and so thats what i did. I was actually better off, taking a break from the whole finding a neuro that knew MS, which was my issue. I didn't have enough mental or physical strength left, i needed that to work on changing what could, but the dx, the dx was not as important as ME!
I've really not got much else to loose, a bit but not much, i'm not being meladramatic just simply stating the facts. I know my big bang in 09 changed everything for me, each relapse since has sealed the deal and i know nothings going to fix that now because i've tried and tried, its just too late, the window for DMD's is surely closed for me now.
I work my @$$ off and I will continue to do so, thats never going to change, thats just a part of me,but i am also a realist. DMD's are not going to fix what i've got thats damaged anyway, the hope is to slow it down not fix, its one component in any treatment plan, granted a very important one but there is still a lot of work that also needs doing if any rewiring is going to happen, i cant stop believing in that.
Its taken decades to be as i am now, i do have enough diagnostic evidence and Dr's who 100% believe there is no other possible explanation though its yet to be made official by a neuro but seriously, what i've experienced is NOT the usual. I very strongly believe in getting second opinions, especially if you have a lot of diagnostic evidence that puts you in the 'probable MS' catagory, seeing a neuro who specialises in MS is only ever going to be in your best interest!
So what if you dont have the lesions on your MRI's, or the clinical signs of or test results that point in the direction of MS, its in those situations that i strongly believe if you have nothing pointing in the direction of MS, then its in your best interest to look at its mimics. Its also in your best interest to put MS on the back burner, to refocus your thoughts and direction. There is nothing stopping you from doing what ever is necessary to get fit and as healthy as you should be, you can be doing that and more, you'll also need to do that anyway so whats the harm.
The simple truth is that waiting for more clinical evidence just makes perfect sense if there isn't enough to dx, the goal is to get the correct dx, right?!
Cheers........JJ
[paid up memeber of our andonandonandon club, another novel by moi lol]
I have to disagree with this neuro to an extent. I would hopefully not have my foot drag and muscle spasms today if had not dealt with the idiot neuro's and the "you don't have" and "wait and see" theory.
With each flare, people said "I don't know" and "you don't have" and the "wait and see" and finally I gave up. When I look back, each flare brought another new problem that all ignored. Finally I gave up, after the 2005 MRI that "told all" but everyone "misread" and fortunately someone one this forum threatened to take me herself if I did not make an appointment with my now "near perfect" neuro who Dx'd me from the 2005 MRI.
But in general, yes.
With each flare, people said "I don't know" and "you don't have" and the "wait and see" and finally I gave up. When I look back, each flare brought another new problem that all ignored. Finally I gave up, after the 2005 MRI that "told all" but everyone "misread" and fortunately someone one this forum threatened to take me herself if I did not make an appointment with my now "near perfect" neuro who Dx'd me from the 2005 MRI.
But in general, yes.
Ren,
Thank you so much for writing this up, and adding the link, and write-up. It's one of my favorites, and puts into perspective SO much of what SO many deal with during and after a work-up for MS, or MS'ish symptoms.
Thank you :)
For all who are frustrated, or confused, please give this a read, it's insight and clarification from a professional who cares.
-Shell
Thank you so much for writing this up, and adding the link, and write-up. It's one of my favorites, and puts into perspective SO much of what SO many deal with during and after a work-up for MS, or MS'ish symptoms.
Thank you :)
For all who are frustrated, or confused, please give this a read, it's insight and clarification from a professional who cares.
-Shell
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Sarah makes a great point. In order to get the care we need, it is imperative that we find a doctor we can work with and trust. It's not always easy, but it is so very important. I am a big fan of second opinions and requesting additional referrals for anyone who is not satisfied with their current neuro or doc.
Bottom line, these two opinions (playing the waiting game versus finding a good neuro) are not really in opposition! Playing the waiting game doesn't always means your neuro is "bad", and having just any old neuro doesn't always mean you'll get the diagnosis at the right time. It depends on the individual case, I think.