Aa
lesions do not cause brain atrophy?
I went to neuro for a numb tongue. He had me stick out my tongue and told me it was fine. Then he tested my leg reflexes with his little hammer with me sitting in a chair with both feet on the floor. I didn't know it could be done that way! When I questioned him about my brain atrophy,if it could have been caused from lesions, he said absolutly not! he said lesions never disappear and never cause atrophy! WHAT? When I questioned him about what caused my ON he said, I'm not sure yet, it could be ms but not sure yet. when i asked about my other symptoms he said maybe ms. then once again he reminded me of the high cost of the meds and the fact that I have a medical card. And once again he said that I have to have more visable lesions on my mri. I already walk with a cane when I can walk. I don't need anymore problems! I feel like nobody understands. I'm between a rock and a hard place. When I asked for a stronger mri machine he stated that it was not necessary. He is the doct and he has been doing this for 32 years. Am I just stupid?
I glanced through your prior posts and noticed that you have a biological brother and father with Wilson's disease, which is a disorder that can cause symptoms similar to MS. Could it be that your neurologist is aware of your family history and is having trouble differentiating your diagnosis based on your test results?
A brief Google session produced this for me:
"Although Wilson's disease and multiple sclerosis are known as distinct diseases with a completely different pathophysiology, symptoms and results of evoked potentials overlap, and they share a common historic background. Similarities and differences of both disorders are discussed." http://www.ncbi.nlm.nih.gov/pubmed/19851743
"The neurological presentation of Wilson's disease is occasionally misdiagnosed as Multiple Sclerosis."
http://books.google.com/books?id=NzXU0DUGypQC&pg=PA97&lpg=PA97&dq=multiple+sclerosis+wilson's+disease+mri&source=bl&ots=TC0mqro-kh&sig=YFy6EQMBc3izQWUYbppzZ7EvUcA&hl=en&sa=X&ei=mGK5T5XPB8fiiAL82sDFBg&ved=0CFcQ6AEwAQ#v=onepage&q=multiple%20sclerosis%20wilson's%20disease%20mri&f=false
A brief Google session produced this for me:
"Although Wilson's disease and multiple sclerosis are known as distinct diseases with a completely different pathophysiology, symptoms and results of evoked potentials overlap, and they share a common historic background. Similarities and differences of both disorders are discussed." http://www.ncbi.nlm.nih.gov/pubmed/19851743
"The neurological presentation of Wilson's disease is occasionally misdiagnosed as Multiple Sclerosis."
http://books.google.com/books?id=NzXU0DUGypQC&pg=PA97&lpg=PA97&dq=multiple+sclerosis+wilson's+disease+mri&source=bl&ots=TC0mqro-kh&sig=YFy6EQMBc3izQWUYbppzZ7EvUcA&hl=en&sa=X&ei=mGK5T5XPB8fiiAL82sDFBg&ved=0CFcQ6AEwAQ#v=onepage&q=multiple%20sclerosis%20wilson's%20disease%20mri&f=false
I know this is an old thread, but can you find out, gently, what your neuro is looking for in order to get a Dx. We know, on the forum, that the McDonald Criteria has changed recently in the last few years, as to the qualifications for MS. Perhaps your neuro is not using the latest version? Just a thought that popped into my head.
Hi Tasha - I'm not sure what the rights and limitations of your Medical Card are. Assuming for the moment that seeing another neurologist is not easy, I agree with Jane. It sounds like, although this guy might be difficult, he hasn't ruled out MS. I wouldn't pick nits about his opinion on individual characteristics until the big picture is understood.
He says he is looking for more lesions. Find out what he means. How many sets of MRI's have you had and has there been any change in lesions from set to set? Are there new lesions from set to set? I hope he is not looking for a specific count before he will dx MS; i.e. 10 lesions = MS but 9 lesions don't.
Based on your clinical exam, plus the MRI evidence, he doesn't seem to be willing to conclude you have MS. Have you had other tests, such as blood work to rule out MS mimics or an LP? What were the results of those tests? If you haven't had blood work or an LP I would ask him why.
If you are "stuck" with this doc it is more important than every to be direct!
Kyle
He says he is looking for more lesions. Find out what he means. How many sets of MRI's have you had and has there been any change in lesions from set to set? Are there new lesions from set to set? I hope he is not looking for a specific count before he will dx MS; i.e. 10 lesions = MS but 9 lesions don't.
Based on your clinical exam, plus the MRI evidence, he doesn't seem to be willing to conclude you have MS. Have you had other tests, such as blood work to rule out MS mimics or an LP? What were the results of those tests? If you haven't had blood work or an LP I would ask him why.
If you are "stuck" with this doc it is more important than every to be direct!
Kyle
No, you aren't stupid, but that neuro sure is! Good luck with your search for someone competent.
I don't think what the SSI doc said would stand up as a diagnosis. I don't know that any doc would feel comfortable diagnosing and/or treating based on nothing more than one set of MRI pictures. Disability awards are based on a person's inability to work over extended periods of time, not on specific disease diagnoses.
I understand this visit wasn't very satisfactory but I'm with Jane about it being difficult to figure out what this neuro is thinking or planning. It does seem clear that he gets incomfortable when he feels challenged. Maybe it would help to change up the way you interact with him? Maybe he would respond better to a statement about your fears (like you provided for us) and a request for information about how you can prevent future decline or disability.
Have you had other testing beside MRI? Those ARE very expensive tests and I am often surprised by the number of imaging sessions ANY of the benefit providers actually do approve.
I understand this visit wasn't very satisfactory but I'm with Jane about it being difficult to figure out what this neuro is thinking or planning. It does seem clear that he gets incomfortable when he feels challenged. Maybe it would help to change up the way you interact with him? Maybe he would respond better to a statement about your fears (like you provided for us) and a request for information about how you can prevent future decline or disability.
Have you had other testing beside MRI? Those ARE very expensive tests and I am often surprised by the number of imaging sessions ANY of the benefit providers actually do approve.
Hi Tasha,
Just wanted to add my $0.02 to the thread. You've gotten great advice,especially Jane's succinct and informational response.
For the record, those who said when lesions "disappear" they create black holes, Bubbles o4, were correct.
You desperately need a new MS neuro to handle dyour case. Seek out an experienced but not ancient MS neuro. DMDs didn't exist before1993 and those who practiced before that have a different view on the things , especially MRIs and DMDs. I say this because my older MS neuro at an academic hospital told me this information and I trust him.
Your husband's idea to compare the CDs from the past 2 years is a great one! Is there any way you can get an appointment with a neuro-radiologist to help interpret the discs?
Let us know how things develop and if you can find a good MS neuro!
Ren
Just wanted to add my $0.02 to the thread. You've gotten great advice,especially Jane's succinct and informational response.
For the record, those who said when lesions "disappear" they create black holes, Bubbles o4, were correct.
You desperately need a new MS neuro to handle dyour case. Seek out an experienced but not ancient MS neuro. DMDs didn't exist before1993 and those who practiced before that have a different view on the things , especially MRIs and DMDs. I say this because my older MS neuro at an academic hospital told me this information and I trust him.
Your husband's idea to compare the CDs from the past 2 years is a great one! Is there any way you can get an appointment with a neuro-radiologist to help interpret the discs?
Let us know how things develop and if you can find a good MS neuro!
Ren
this makes no sense to me that the SSDI doctor would dx you with MS and approve your disability without there being solid proof.
Your doc has said just enough things that set off red flags to me that I would not feel comfortable in his care. Good luck to you and your hubby in figuring this out. Its complicated enough, without these conflicting messages.
Your doc has said just enough things that set off red flags to me that I would not feel comfortable in his care. Good luck to you and your hubby in figuring this out. Its complicated enough, without these conflicting messages.
thanks gave me a good idea this is Mary's husband we have kept all the dvd 's that have been taken. for almost 2 years maybe I can have them mesure the brain that to me seems like a good idea. if there is any shrinkage it is on. I dont know how much evidence has to be there
Thank you to all!! At least I know someone is listening to me. All of you had excellent responses. Thanks for careing! I am looking for different doctor...but my husband and I are stumped aat the moment.
COMMUNITY LEADER
Oh dear, your stuck between a rock and a hard place, arn't you? I've never heard of a state disability doc dxing/accepting MS and the neuro still umming and arrring, its 'typically' the other way round. In my head the only logic for that, would be that YOU must have more than enough diagnostic evidence for a clinically defined diagnosis of MS!
I really really really think you need to see a new neuro, preferably an MS specialist, apart from the incorrect information your being given, he's probably not going to commit to a dx, to do so would be an admittion of him failing you, can't see it happening, can you?
See http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1817
"The mean [average] annualised rate of cerebral atrophy was -0.9 percentage of brain volume change per year," the authors write. "Baseline normalised brain volume and baseline T2 lesion load were identified as explanatory variables for the subsequent percentage of brain volume change per year and yielded a regression model that explained 31.2 percent of the variance in percentage of brain volume change per year."
In other words, "patients who have acquired more brain tissue loss and more T2 lesions are prone to have a higher rate of subsequent brain atrophy," the authors conclude. "In this relationship, the extent of brain tissue loss seemed more important than lesional activity. Because a higher rate of cerebral atrophy is predictive of worse clinical functioning at a later stage in the MS disease course, our findings suggest that these two baseline variables could have prognostic value for clinical functioning in early MS."
Understanding How MS Worsens
In patients with MS, "the unpredictable and often dramatic appearance of clinical relapses and focal MRI abnormalities tend to catch our attention," writes J. Theodore Phillips, M.D., Ph.D., of The Multiple Sclerosis Center at Texas Neurology, Dallas, in an accompanying editorial. "However, these events can often obscure more insidious, but no less important, destructive changes, such as irreversible disability progression and MRI-evident brain atrophy."
"In this issue of Archives, Jasperse and colleagues demonstrate that the rate of new brain atrophy in newly diagnosed MS patients studied over two years is significantly predicted by MRI-determined brain atrophy and T2 lesion load at the time of diagnosis. Lower brain volume and higher T2 lesion load at the time of diagnosis predict greater brain volume loss over a two-year observation period.
"This finding provides not only important clinical prognostic information, but also indicates the necessity of accounting for these baseline MRI variables in future clinical study designs that use brain atrophy as an outcome variable," Dr. Phillips continues."
This site has a few studies relating to Atrophy and MS, this exert is almost at the bottom of the page, but the point is that atrophy is related to lesions and grey matter. 32 years is often an indicator of experise but if what they state as facts are incorrect, it can also indicate they are not upto date and stating old and now disproven by world wide research, so its time to move on!!
Cheers...........JJ
I really really really think you need to see a new neuro, preferably an MS specialist, apart from the incorrect information your being given, he's probably not going to commit to a dx, to do so would be an admittion of him failing you, can't see it happening, can you?
See http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1817
"The mean [average] annualised rate of cerebral atrophy was -0.9 percentage of brain volume change per year," the authors write. "Baseline normalised brain volume and baseline T2 lesion load were identified as explanatory variables for the subsequent percentage of brain volume change per year and yielded a regression model that explained 31.2 percent of the variance in percentage of brain volume change per year."
In other words, "patients who have acquired more brain tissue loss and more T2 lesions are prone to have a higher rate of subsequent brain atrophy," the authors conclude. "In this relationship, the extent of brain tissue loss seemed more important than lesional activity. Because a higher rate of cerebral atrophy is predictive of worse clinical functioning at a later stage in the MS disease course, our findings suggest that these two baseline variables could have prognostic value for clinical functioning in early MS."
Understanding How MS Worsens
In patients with MS, "the unpredictable and often dramatic appearance of clinical relapses and focal MRI abnormalities tend to catch our attention," writes J. Theodore Phillips, M.D., Ph.D., of The Multiple Sclerosis Center at Texas Neurology, Dallas, in an accompanying editorial. "However, these events can often obscure more insidious, but no less important, destructive changes, such as irreversible disability progression and MRI-evident brain atrophy."
"In this issue of Archives, Jasperse and colleagues demonstrate that the rate of new brain atrophy in newly diagnosed MS patients studied over two years is significantly predicted by MRI-determined brain atrophy and T2 lesion load at the time of diagnosis. Lower brain volume and higher T2 lesion load at the time of diagnosis predict greater brain volume loss over a two-year observation period.
"This finding provides not only important clinical prognostic information, but also indicates the necessity of accounting for these baseline MRI variables in future clinical study designs that use brain atrophy as an outcome variable," Dr. Phillips continues."
This site has a few studies relating to Atrophy and MS, this exert is almost at the bottom of the page, but the point is that atrophy is related to lesions and grey matter. 32 years is often an indicator of experise but if what they state as facts are incorrect, it can also indicate they are not upto date and stating old and now disproven by world wide research, so its time to move on!!
Cheers...........JJ
Since the doc keeps bringing up you medical card it seems to me that regardless of what what results he see he will not treat you. RUN to see another Neuro that will treat you.
Dennis
Dennis
RUN..........quick...........to another neuro
he's so full of smoke..........
everyone has given you excellent advice so I won't repeat it.
golly many get a neuro who agrees and a disability neuro who doesn't, yours is the opposite! Perhaps he could refer you to a "GOOD" neuro.
I'd not waste my time on this one. He may be the doc but he's got some of his facts very mixed up.
he's so full of smoke..........
everyone has given you excellent advice so I won't repeat it.
golly many get a neuro who agrees and a disability neuro who doesn't, yours is the opposite! Perhaps he could refer you to a "GOOD" neuro.
I'd not waste my time on this one. He may be the doc but he's got some of his facts very mixed up.
If the disability doc has already looked and made a definite statement, then you need another neurologist that will actually treat you. It's really horrible that Medicaid/medicare patients get such shabby treatment.
Yes the disability doc from the state actuallly looked at my mri's and stated it was definate MS. that is why i get ssi. my neuro won't accept this.
Thats a great reply from Jane! What great advise, I agree with everything she is saying.
I have to admit I am pretty thoroughly confused. I don't get to read every post here on the forum, but I can see in your posting history that at different times you've stated that 1) you are diagnosed with MS, 2) you are diagnosed with probable MS, and 3) you are not diagnosed with MS. I can tell you're going through a really rough time, and in the pits of limbo. You may have had a diagnosis that was later revoked. After all that, I'm concerned about your ability to work with a doctor (good or bad) to get the healthcare you deserve.
Lulu gives you a ton of great advice above, but I am not sure I agree that this neuro sounds like he's already made up his mind. Obviously I wasn't in the room to know the complete story or hear the tone of voice he used with you, but from what you're saying I am reading that this neuro is still seeing you to conduct testing, and he's being honest when he tells you that he cannot diagnose you based on the tests and evidence that he sees at this point in time. It sounds like he is open to the idea that you may have MS or some other disease but he can't figure it out right now. Maybe the evidence is there and this guy is just scared to say so, or maybe the evidence really isn't there yet. I just can't tell.
That said, if you want another opinion from a different neuro to see whether someone else who is trained *can* figure out what's going on, then by all means ask for another opinion. I don't know the first thing about your medical card or what it gives you rights to, but I would guess if you want another opinion the place to start would be by having a calm discussion with your primary care doctor to say that you feel that something is wrong and are afraid the neuro you have been seeing is missing it. Tell your doc that you want another opinion for your own peace of mind. Be firm, but be as respectful and calm as possible. If that won't work, maybe you can find an MS Specialist an make an appointment yourself. You'd probably have to pay out of pocket, but it might be worthwhile to get the ball rolling on another MRI (didn't you have MRI's on a crappy machine at some point?).
I hope this is helpful. I wish you the best, and sincerely hope you find the help you deserve very, very soon.
- Jane
Lulu gives you a ton of great advice above, but I am not sure I agree that this neuro sounds like he's already made up his mind. Obviously I wasn't in the room to know the complete story or hear the tone of voice he used with you, but from what you're saying I am reading that this neuro is still seeing you to conduct testing, and he's being honest when he tells you that he cannot diagnose you based on the tests and evidence that he sees at this point in time. It sounds like he is open to the idea that you may have MS or some other disease but he can't figure it out right now. Maybe the evidence is there and this guy is just scared to say so, or maybe the evidence really isn't there yet. I just can't tell.
That said, if you want another opinion from a different neuro to see whether someone else who is trained *can* figure out what's going on, then by all means ask for another opinion. I don't know the first thing about your medical card or what it gives you rights to, but I would guess if you want another opinion the place to start would be by having a calm discussion with your primary care doctor to say that you feel that something is wrong and are afraid the neuro you have been seeing is missing it. Tell your doc that you want another opinion for your own peace of mind. Be firm, but be as respectful and calm as possible. If that won't work, maybe you can find an MS Specialist an make an appointment yourself. You'd probably have to pay out of pocket, but it might be worthwhile to get the ball rolling on another MRI (didn't you have MRI's on a crappy machine at some point?).
I hope this is helpful. I wish you the best, and sincerely hope you find the help you deserve very, very soon.
- Jane
Excuse my ignorance if I am wrong but, I thought the brain atrophy in MS patients was due to a lesion becoming very bad that the area "dies". This is a black hole I believe. I heard that when this happens it decreases the brain size, this to me is atrophy. So do lesions cause atrophy? No but when a lesion gets really bad, the body can't repair it anymore this part of the brain goes through atrophy.
You don't sound crazy to me at all, you should be insulted by his words. So what MS is expensive and you have a medical card. You have every right to good, honest healthcare. Ditch the doc and find another.
You don't sound crazy to me at all, you should be insulted by his words. So what MS is expensive and you have a medical card. You have every right to good, honest healthcare. Ditch the doc and find another.
Who's stupid? Definitely not you. Is there any way you can go to a different doctor? This one has obviously made up his mind and isn't open to any other possibilities. Just because you have a 'card' doesn't mean you don't deserve equal medical care.
As for the atrophy question I will leave that for someone else. But I will strongly disagree that lesions don't disappear. The body constantly tries to heal itself, and that includes the damage to our myelin. Its not perfect, but will often make once visible lesions not longer visible on MRI imaging. Also, it appears some of the DMDs have a healing effect and are reversing lesions as well.
You neuro sounds like a dufus and if possible, get the heck out of his care and go elsewhere.
-L
As for the atrophy question I will leave that for someone else. But I will strongly disagree that lesions don't disappear. The body constantly tries to heal itself, and that includes the damage to our myelin. Its not perfect, but will often make once visible lesions not longer visible on MRI imaging. Also, it appears some of the DMDs have a healing effect and are reversing lesions as well.
You neuro sounds like a dufus and if possible, get the heck out of his care and go elsewhere.
-L
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