Aa
How many are misdiagnosed?
Just curious . . . any idea what percentage of people diagnosed with MS find out later they were misdiagnosed? I've often thought this was why neurologists were slow to label . . . but that doesn't make much sense to me any longer. AND is there harm in taking a DMD if you don't truly have MS?
No problem Lois. I'm sure my own frustration was showing too, not to mention a little MS irritability. I only included the part about my own neuro because I know you are fairly new here and it's hard to keep the diagnosed and limbolander's straight. (Even harder when Dx get stolen away - that happened to me too.)
Comments often don't have the same 'sound' in print as they do verbally or in our heads. That's true for all of us too. Believe me, I understand! I have a sarcastic side that I have to work to keep under control as it is often misunderstood or wears on people's nerves. Fortunately, we don't have to guard what we say around here too much. Otherwise it would be hard to have the good honest conversations we do.
With all that said......more than once I've wished there was an edit button here so my own faux pas weren't so permanently o-u-t-t-h-e-r-e.
Mary
(who once again said more than necessary)
Comments often don't have the same 'sound' in print as they do verbally or in our heads. That's true for all of us too. Believe me, I understand! I have a sarcastic side that I have to work to keep under control as it is often misunderstood or wears on people's nerves. Fortunately, we don't have to guard what we say around here too much. Otherwise it would be hard to have the good honest conversations we do.
With all that said......more than once I've wished there was an edit button here so my own faux pas weren't so permanently o-u-t-t-h-e-r-e.
Mary
(who once again said more than necessary)
Hi Mary, I didn't mean to infer that your neurologist is oblivious. I was flippant and I apologize.
I really wish that there was an answer, and I wish there was more education with neurologists with this very issue. So much neurological damage could at the least be deferred for those of us that are not treated. But I know you already know that.
I am frustrated with my own issue and of course that colors my comments at times.
I am glad that you have a good doc' and I'm sorry I didn't put more thought into it before I commented. lois
I really wish that there was an answer, and I wish there was more education with neurologists with this very issue. So much neurological damage could at the least be deferred for those of us that are not treated. But I know you already know that.
I am frustrated with my own issue and of course that colors my comments at times.
I am glad that you have a good doc' and I'm sorry I didn't put more thought into it before I commented. lois
You're absolutely correct that Quix gave an excellent explanation.
My question was actually largely rhetorical in nature as I do not believe there is a reason, let alone a good one.
My neurologist is not oblivious. Sure he would have preferred to see my brain lesions were in "classic" locations but that didn't make him withhold my MS diagnosis. He diagnosed and started DMDs after evaluating my signs, symptoms, history, and total lab results.
Mary
My question was actually largely rhetorical in nature as I do not believe there is a reason, let alone a good one.
My neurologist is not oblivious. Sure he would have preferred to see my brain lesions were in "classic" locations but that didn't make him withhold my MS diagnosis. He diagnosed and started DMDs after evaluating my signs, symptoms, history, and total lab results.
Mary
I think Quix explained the reasons very well. At the end of the day, if your neurologist is still oblivious----ask him/her for a referral to a real neurologist. :-)
"The question the docs should ask is 'Can the lesions that the patient has be seen in known MS?'"
I think there are many docs who don't ask this question because they don't know the answer Quix. I think you are right when you say some have no confidence (therefore they want the validation of definitive testing) and others aren't well informed or educated.
It baffles me that doctors continue to refuse to diagnose MS when everything else is ruled out, all clinical information points to MS, and a patient reports continued deterioration. Yes, there are disadvantages to carrying the diagnosis of MS. When we're diagnosed it's one of the things we learn to live with.
The thing I will never understand is WHY, OH WHY doctors consider it preferable to label patients with a false diagnosis of conversion disorder or stress induced disability? WHY!!
Mary
I think there are many docs who don't ask this question because they don't know the answer Quix. I think you are right when you say some have no confidence (therefore they want the validation of definitive testing) and others aren't well informed or educated.
It baffles me that doctors continue to refuse to diagnose MS when everything else is ruled out, all clinical information points to MS, and a patient reports continued deterioration. Yes, there are disadvantages to carrying the diagnosis of MS. When we're diagnosed it's one of the things we learn to live with.
The thing I will never understand is WHY, OH WHY doctors consider it preferable to label patients with a false diagnosis of conversion disorder or stress induced disability? WHY!!
Mary
We do need to discuss this periodically. It's a subject that is near and dear to most of us, especially those in limbo.
The older statistics on misdiagnosis state that on average in any given MS Clinic 5% to 10% of people will be misdiagnosed with MS. Newer studies land closer to the 5% that ess mentioned. However, a statistic that I have Never seen discussed is the percentage of people carrying diagnoses like CFIDS and Fibro who turn out to have MS. So I think the problem swings both ways.
I, also, need to correct Phoenix's misconception that the DMD's are immunosuppressants. They certainly are not. However, Pheonix is in a very large group who have been told this. Also some of our poorer educated neurologists believe this, too, which adds to their reluctance to diagnose MS.
An immunosuppressant is a drug that by its direct action decreases the activity of the body's immune system and lays it open to infections. This applies to the run-of-the-mill infections like the usual bacterial and viral things that we run into, but also to infections called opportunistic inffections like fungal and tuberculosis. People on immunosuppressants must constantly protect themselves from exposure to others. There are a whole list of things they need to avoid.
The chemotherapy used in cancer are usually immunosupressive drugs. THESE are the heavy hitters with regard to suppressing the immune system. The drugs attack the bone marrow and lower the infection-fighting cells, both the neutrophils and the lymphocytes. This attack on the immune system of true infections also raises the risk of some people with cancer to fight off future cancers. In fact, after several different kinds of immnosuppressant chemotherapy, many people are at risk for secondary cnacers in the future. This DOES NOT occur with the DMDs.
A lowering of neutrophils is a possible side effect of the Interferons, but it is really quite rare. It generally happens very slowly and is one of the things that can be monitored for in doing blood tests periodically (like every 6 months). When the neutrophils drop to extremely low levels the body's infection-fighting status is endangered, but, again, this is really quite rare. So, it is not at all expected when using the DMDs.
The Disease Modulating Drugs change the proportions of the different kinds of activated lymphocytes. When they are effective this affects the actions of our disease. It DOES NOT affect the ability of our immune system to fight off cancers and infections, nor does it lead to an increase in other autoimmune diseases, like Rheumatoid Arthritis. There is another Interferon, called Interferon-Alpha that was used in the treatment of melanoma (and Hep C??). Maybe it still is. Interferon-alpha has been shown to raise the risk of developing RA later,in fact this happen to my cousin. The DMDs used in MS have NEVER shown this.
The Interferon-beta-1a drugs (Avonex and Rebif) and the Interferon-beta-1b (Betaseron) are chemicals that the body, itself produces. Yes, they are naturally occurring in our own bodies, produced by our own immune systems. In fact, during some viral infections (most notably influenza) the body produced them in large quantities. This is the cause of the aches, muscle pain and fatigue of the flu - and explains why we can have flu-like symptoms when taking an interferon.
The gist of all this: The DMDs are NOT immunosuppressants.
Why are some docs so hesitant to diagnose if the presentation is not absolutely classic? I think it varies. Some are just unconfident weenies. They don't know enough to be dealing with this disease and believe that MS follows rigid rules. Also, I think that they don't understand that there are no longterm effects to taking the DMDs - other than cost and nuisance of injecting. Legal liability might also play a role, but it would only be valid if a reasonably thorough search for Mimics has not been done.
I have strong condemnation for those neuros who REMOVE a diagnosis, but have nothing better to replace it with. I cannot fathom the rationale for doing this. If there is no suggestion of something else being the cause of the patient's problems, then HOW can they have any confidence that MS is not the diagnosis.
If something is apparent in the patient's clinical picture that another disease process is at work, then I can see placing the diagnosis of MS on hold until that other entity is explored. But, it is in the patients best interest to be acting on the best explanation.
Where do I fall in all of this??? All the many, large, rigorous studies that have examined this have found that early treatment with a DMD is the BEST hope of slowing this disease. When neuros hestitate to diagnose after an appropriate work up, they somehow fail to weigh the true balance of their actions. They seem to be considering only the absolute accuracy of the diagnosis. They fail to weigh the consequences of delaying or withholding diagnosis. Our disability can be profound. And once lost, neurons can NOT be regained. If only damaged, we can hope for some level of repair. Yes, neuroplasticity can occur, but it is not reliable and not all deficits can rewire to restore function.
If the weight of the evidence points to MS, an a thorough look for other offenders has been done, the DMDs should be begun. Yes, only a portion of people respond, but we can't yet predict which those will be, so the best solution, in my mind is to begin everyone on them.
The McDonald Criteria? I find them really quite clear. They are still quite adamant that the CLINICAL picture rules over any of the testing. If a person has had two or more clear attacks and has had psysical evidence of damage in two or more areas of the CNS, then the MRI is looked to ONLY for confirming evidence. This confirming evidence is NOT REQUIRED by the McDonald Criteria, but is felt to be desirable.
The lesions must only be "consistent with" MS. They do NOT have to be classic. What does "consistent with mean"? The question the docs should ask is "Can the lesions that the patient has be seen in known MS?" If the answer is "Yes", then those lesions are acceptable for diagnosis. In the case noted above, the lesions are punctate. Can punctate lesions occur in MS. The resounding answer is ABSOTIVELY, POSILUTELY! Then if the clincial picture looks and acts like MS, then punctate lesions are fine for the diagnosis.
Again, proving that I am Master of the support group for people who talk too much,
ON-AND-ON-ANON
I leave you,
Quix
The older statistics on misdiagnosis state that on average in any given MS Clinic 5% to 10% of people will be misdiagnosed with MS. Newer studies land closer to the 5% that ess mentioned. However, a statistic that I have Never seen discussed is the percentage of people carrying diagnoses like CFIDS and Fibro who turn out to have MS. So I think the problem swings both ways.
I, also, need to correct Phoenix's misconception that the DMD's are immunosuppressants. They certainly are not. However, Pheonix is in a very large group who have been told this. Also some of our poorer educated neurologists believe this, too, which adds to their reluctance to diagnose MS.
An immunosuppressant is a drug that by its direct action decreases the activity of the body's immune system and lays it open to infections. This applies to the run-of-the-mill infections like the usual bacterial and viral things that we run into, but also to infections called opportunistic inffections like fungal and tuberculosis. People on immunosuppressants must constantly protect themselves from exposure to others. There are a whole list of things they need to avoid.
The chemotherapy used in cancer are usually immunosupressive drugs. THESE are the heavy hitters with regard to suppressing the immune system. The drugs attack the bone marrow and lower the infection-fighting cells, both the neutrophils and the lymphocytes. This attack on the immune system of true infections also raises the risk of some people with cancer to fight off future cancers. In fact, after several different kinds of immnosuppressant chemotherapy, many people are at risk for secondary cnacers in the future. This DOES NOT occur with the DMDs.
A lowering of neutrophils is a possible side effect of the Interferons, but it is really quite rare. It generally happens very slowly and is one of the things that can be monitored for in doing blood tests periodically (like every 6 months). When the neutrophils drop to extremely low levels the body's infection-fighting status is endangered, but, again, this is really quite rare. So, it is not at all expected when using the DMDs.
The Disease Modulating Drugs change the proportions of the different kinds of activated lymphocytes. When they are effective this affects the actions of our disease. It DOES NOT affect the ability of our immune system to fight off cancers and infections, nor does it lead to an increase in other autoimmune diseases, like Rheumatoid Arthritis. There is another Interferon, called Interferon-Alpha that was used in the treatment of melanoma (and Hep C??). Maybe it still is. Interferon-alpha has been shown to raise the risk of developing RA later,in fact this happen to my cousin. The DMDs used in MS have NEVER shown this.
The Interferon-beta-1a drugs (Avonex and Rebif) and the Interferon-beta-1b (Betaseron) are chemicals that the body, itself produces. Yes, they are naturally occurring in our own bodies, produced by our own immune systems. In fact, during some viral infections (most notably influenza) the body produced them in large quantities. This is the cause of the aches, muscle pain and fatigue of the flu - and explains why we can have flu-like symptoms when taking an interferon.
The gist of all this: The DMDs are NOT immunosuppressants.
Why are some docs so hesitant to diagnose if the presentation is not absolutely classic? I think it varies. Some are just unconfident weenies. They don't know enough to be dealing with this disease and believe that MS follows rigid rules. Also, I think that they don't understand that there are no longterm effects to taking the DMDs - other than cost and nuisance of injecting. Legal liability might also play a role, but it would only be valid if a reasonably thorough search for Mimics has not been done.
I have strong condemnation for those neuros who REMOVE a diagnosis, but have nothing better to replace it with. I cannot fathom the rationale for doing this. If there is no suggestion of something else being the cause of the patient's problems, then HOW can they have any confidence that MS is not the diagnosis.
If something is apparent in the patient's clinical picture that another disease process is at work, then I can see placing the diagnosis of MS on hold until that other entity is explored. But, it is in the patients best interest to be acting on the best explanation.
Where do I fall in all of this??? All the many, large, rigorous studies that have examined this have found that early treatment with a DMD is the BEST hope of slowing this disease. When neuros hestitate to diagnose after an appropriate work up, they somehow fail to weigh the true balance of their actions. They seem to be considering only the absolute accuracy of the diagnosis. They fail to weigh the consequences of delaying or withholding diagnosis. Our disability can be profound. And once lost, neurons can NOT be regained. If only damaged, we can hope for some level of repair. Yes, neuroplasticity can occur, but it is not reliable and not all deficits can rewire to restore function.
If the weight of the evidence points to MS, an a thorough look for other offenders has been done, the DMDs should be begun. Yes, only a portion of people respond, but we can't yet predict which those will be, so the best solution, in my mind is to begin everyone on them.
The McDonald Criteria? I find them really quite clear. They are still quite adamant that the CLINICAL picture rules over any of the testing. If a person has had two or more clear attacks and has had psysical evidence of damage in two or more areas of the CNS, then the MRI is looked to ONLY for confirming evidence. This confirming evidence is NOT REQUIRED by the McDonald Criteria, but is felt to be desirable.
The lesions must only be "consistent with" MS. They do NOT have to be classic. What does "consistent with mean"? The question the docs should ask is "Can the lesions that the patient has be seen in known MS?" If the answer is "Yes", then those lesions are acceptable for diagnosis. In the case noted above, the lesions are punctate. Can punctate lesions occur in MS. The resounding answer is ABSOTIVELY, POSILUTELY! Then if the clincial picture looks and acts like MS, then punctate lesions are fine for the diagnosis.
Again, proving that I am Master of the support group for people who talk too much,
ON-AND-ON-ANON
I leave you,
Quix
risnerrose- I think it is the fear of lawsuits that prevents them from diagnosing. They want typical lesions..BUT MS doesn't necessarily follow the textbook and present the same way. Everyone's course is different, as is their symptoms. I've fallen through the cracks just because I'm not typical, so their ideal of healthcare for me is "watch and wait" and treat symptoms...translation to me..I have to damage myself more, so it's easier for them to diagnose, losing more of my abilities, until I fit their idea of what a typical MS patient looks like on MRI, even though the National MS Society's webpage states that a negative MRI doesn't necessarily means no MS.
My MRI isn't exactly negative..just not the "typical" MS lesions size.
RedFlame- It is frustrating to say the least and I do believe we need more of a voice. I know that the standard for diagnosing is the McDonald Criteria, but it's funny how neuros translate what it means. I've seen so many interpretations of it. If they could get all neuros on the same page, that would be much easier.
I've tried to explain to my doctors my decline in abilities. They can see it also, but as far as acting on it, so far they've not done anything except offer drugs for symptoms and PT for the weakness. If I was a doctor, I would want to know the cause of all these symptoms, instead of just throwing pills at it and thinking my job was done.
My MRI isn't exactly negative..just not the "typical" MS lesions size.
RedFlame- It is frustrating to say the least and I do believe we need more of a voice. I know that the standard for diagnosing is the McDonald Criteria, but it's funny how neuros translate what it means. I've seen so many interpretations of it. If they could get all neuros on the same page, that would be much easier.
I've tried to explain to my doctors my decline in abilities. They can see it also, but as far as acting on it, so far they've not done anything except offer drugs for symptoms and PT for the weakness. If I was a doctor, I would want to know the cause of all these symptoms, instead of just throwing pills at it and thinking my job was done.
The doctors have all the control. They have the control to diagnose, undiagnose, treat or not treat. The other part of this is they have to 'prove' the diagnosis with objective findings They have the power to give pain relief or not. They get paid no matter what happens to us.
I think we need a voice! I'm not sure how we could do it, but I would like a way to help doctors see the other side of this. They are so afraid of lawsuits for mis-diagnosing that they can't see the other side of this. We continue to have further neurological damage while we are being diagnosed.
It seems like we should more of a say in our healthcare. It is so incredibly frustrating
I think we need a voice! I'm not sure how we could do it, but I would like a way to help doctors see the other side of this. They are so afraid of lawsuits for mis-diagnosing that they can't see the other side of this. We continue to have further neurological damage while we are being diagnosed.
It seems like we should more of a say in our healthcare. It is so incredibly frustrating
Exactly why I was pondering on this! Why not go ahead and call it MS and treat it . . . and then, if something else shows up, change then. Perhaps law suits are the concern to the neuro?????
Presently, I have no diagnosis of any kind. I've had doctors recognize that something is wrong with my neurological system, but as to what, they will not diagnose. Most of my other doctors believe MS and I've been tested out the ying yang for mimics, even the non standard mimics. I have came up negative on all the mimics. My neuros say, whatever I have acts likes MS, looks like MS, follows like a textbook case, but aren't willing to diagnose only because my lesions are nonspecific in my brain and are 2-3mm in size.
My lesions, they say could be from MS, but also could occur in migraines, and ischemic problems...but my symptoms do not follow migraines or ischemic problems..but still I have no diagnosis.
If given the chance, even without a firm diagnosis, I would jump at a chance to take DMD drugs. My neuros have been too conservative when it has come to my care, and in the meantime, my body has paid the price. I went from walking normally, then walking with a limp, to requiring a cane. If anything could help slow this process down, even with side effects, I would give it a try.
My lesions, they say could be from MS, but also could occur in migraines, and ischemic problems...but my symptoms do not follow migraines or ischemic problems..but still I have no diagnosis.
If given the chance, even without a firm diagnosis, I would jump at a chance to take DMD drugs. My neuros have been too conservative when it has come to my care, and in the meantime, my body has paid the price. I went from walking normally, then walking with a limp, to requiring a cane. If anything could help slow this process down, even with side effects, I would give it a try.
Why are neurologists so hesitant to give a diagnosis? Does it come down to money . . . expensive DMD's, insurance companies, etc.???
For the record, I have seen three neurologists and have been diagnosed, undiagnosed, and rediagnosed. The MS specialist was the neuro that removed the diagnosis. He spoke about "being labeled" and the "downside of the meds". (He admitted to being very conservative when it came to diagnosing.) My current neuro is quite an advocate for early use of DMD's . . . hard to believe they are in the same profession.
Just trying to make sense of it all . . .LOL!!
For the record, I have seen three neurologists and have been diagnosed, undiagnosed, and rediagnosed. The MS specialist was the neuro that removed the diagnosis. He spoke about "being labeled" and the "downside of the meds". (He admitted to being very conservative when it came to diagnosing.) My current neuro is quite an advocate for early use of DMD's . . . hard to believe they are in the same profession.
Just trying to make sense of it all . . .LOL!!
My neuro once told me that 95% of those diagnosed with MS who later undergo autopsy will have that diagnosis confirmed. Obviously this isn't 100% but 19 out of 20 is still pretty impressive.
As to harm in taking a DMD when MS is wrongly diagnosed---well, here are the facts. You and your insurance company will spend a lot of money needlessly. And if you're on an interferon, you may well get the typical reactions this causes.
These mostly include flu types of symptoms. Fever, chills, aches and pain are common, though some users are lucky enough to have no reaction at all. Many more find that these symptoms decrease greatly as time goes on. Many others (including me) have continuing reactions but are able to control them through careful use of premedications such as Aleve. A few have such bad reactions that their quality of life is seriously compromised, and they discontinue the med accordingly. It is not possible to guess in advance which category we will fall into.
The cautions and warnings on sites such as drugs.com are very appropriate. Drug manufacturers are required to list all effects that might be caused by a given prescription. Every drug in existence comes with a long list of potential bad effects, from aspirin on. Do you read the labels and package inserts on even OTC meds such as cough medicine? They are full of warnings, because consumers should be informed. Do you watch drug commercials on TV? At least half of the time is used to say what might go wrong, and it sounds horrible. Still, people take these drugs, and they usually work just fine.
The truth is that only a very small number of users will experience any significant adverse reactions. This is also true of the interferons for MS, depending on how you define 'significan't.' If it is bad enough that intervening measures don't work and the patient's quality of life is affected, I call that significant. Others may have another definition. It also must be said that interferons can easily be discontinued if that is necessary. There are 'no' life-threatening complications.
I think this covers the case against interferons in MS. (Copaxone is another discussion, though to me the philosophy is the same.) So what is the case for letting the disease just take its course?
First, let's talk about serious physical disability. How does a wheelchair sound? How about blindness, deafness, paralysis of one or more limbs, urinary or fecal incontinence, inability to swallow, pneumonia, spasticity, intractable pain? Maybe cognitive deficits that make earning a living a thing of the past? Any many more sensory and motor problems, serious depression, and other outcomes that make life seem not worth living, at times.
Even though interferons are no guarantee that we won't experience these horrible complications, they at least have been shown scientifically to be effective to a significant, measurable extent. Science has shown that attacks and relapses, which cause these disabilites, have been reduced by more than 30% with the use of the DMDs. That could well mean the difference between walking unaided and needing a wheelchair or some other mobility aid. It could mean that cognitive or sexual effects are minimized. I could give many more examples, but you get the idea.
For me, this is a no-brainer. For others, I respect your decisions, provided you have made them after careful consideration of the facts.
No matter what happens to me down the road, I will be glad to be able to say I did my best against this monster.
ess
As to harm in taking a DMD when MS is wrongly diagnosed---well, here are the facts. You and your insurance company will spend a lot of money needlessly. And if you're on an interferon, you may well get the typical reactions this causes.
These mostly include flu types of symptoms. Fever, chills, aches and pain are common, though some users are lucky enough to have no reaction at all. Many more find that these symptoms decrease greatly as time goes on. Many others (including me) have continuing reactions but are able to control them through careful use of premedications such as Aleve. A few have such bad reactions that their quality of life is seriously compromised, and they discontinue the med accordingly. It is not possible to guess in advance which category we will fall into.
The cautions and warnings on sites such as drugs.com are very appropriate. Drug manufacturers are required to list all effects that might be caused by a given prescription. Every drug in existence comes with a long list of potential bad effects, from aspirin on. Do you read the labels and package inserts on even OTC meds such as cough medicine? They are full of warnings, because consumers should be informed. Do you watch drug commercials on TV? At least half of the time is used to say what might go wrong, and it sounds horrible. Still, people take these drugs, and they usually work just fine.
The truth is that only a very small number of users will experience any significant adverse reactions. This is also true of the interferons for MS, depending on how you define 'significan't.' If it is bad enough that intervening measures don't work and the patient's quality of life is affected, I call that significant. Others may have another definition. It also must be said that interferons can easily be discontinued if that is necessary. There are 'no' life-threatening complications.
I think this covers the case against interferons in MS. (Copaxone is another discussion, though to me the philosophy is the same.) So what is the case for letting the disease just take its course?
First, let's talk about serious physical disability. How does a wheelchair sound? How about blindness, deafness, paralysis of one or more limbs, urinary or fecal incontinence, inability to swallow, pneumonia, spasticity, intractable pain? Maybe cognitive deficits that make earning a living a thing of the past? Any many more sensory and motor problems, serious depression, and other outcomes that make life seem not worth living, at times.
Even though interferons are no guarantee that we won't experience these horrible complications, they at least have been shown scientifically to be effective to a significant, measurable extent. Science has shown that attacks and relapses, which cause these disabilites, have been reduced by more than 30% with the use of the DMDs. That could well mean the difference between walking unaided and needing a wheelchair or some other mobility aid. It could mean that cognitive or sexual effects are minimized. I could give many more examples, but you get the idea.
For me, this is a no-brainer. For others, I respect your decisions, provided you have made them after careful consideration of the facts.
No matter what happens to me down the road, I will be glad to be able to say I did my best against this monster.
ess
Once upon a time two women sat on opposite sides of the Canadian/USA border being of like mind to answer a question that has no clear answer. Simultaneously they raised their right pinkies to strink the ENTER key one last time, sending their comments and hoping to be helpfull to fellow MSers. In the end it was DV to the north touching just ahead of her American counterpart.
In other words, I guess we posted at the same time DV. Nicely said about your druthers.
Mary
In other words, I guess we posted at the same time DV. Nicely said about your druthers.
Mary
Some things I learned at a recent seminar:
The DMDs are not immunosuppressants. They are immunomodulators. This means they calm down the immune system so it isn't in hyper-drive attacking it's own nervous system. The ability to fight off foreign invaders remains intact.
The interferon type drugs and Copaxone accomplish this in different ways. But both are immunomodulators rather than immunosuppresants.
I have no idea how many people are misdiagnosed as having MS or not having MS. Without a specific test or firm agreement among doctors concerning interpretation of diagnostic criteria, I believe certitude of diagnosis will remain elusive for some time.
The DMDs have an excellent safety record on their own and the risks are actually minimal when looked at in comparison to other drugs we ingest every day with little thought.
Each person must weigh the risk of treatment against the risk of disease progression to find out what is acceptable for themselves. Of course, the confidence you have in a specific physician's knowledge and diagnostic/treatment skills and your relationship with that physician are important factors in deciding your individual course.
In the end......as always.....find the best neuro you can for the best life with MS (or whatever else you've got).
Mary
The DMDs are not immunosuppressants. They are immunomodulators. This means they calm down the immune system so it isn't in hyper-drive attacking it's own nervous system. The ability to fight off foreign invaders remains intact.
The interferon type drugs and Copaxone accomplish this in different ways. But both are immunomodulators rather than immunosuppresants.
I have no idea how many people are misdiagnosed as having MS or not having MS. Without a specific test or firm agreement among doctors concerning interpretation of diagnostic criteria, I believe certitude of diagnosis will remain elusive for some time.
The DMDs have an excellent safety record on their own and the risks are actually minimal when looked at in comparison to other drugs we ingest every day with little thought.
Each person must weigh the risk of treatment against the risk of disease progression to find out what is acceptable for themselves. Of course, the confidence you have in a specific physician's knowledge and diagnostic/treatment skills and your relationship with that physician are important factors in deciding your individual course.
In the end......as always.....find the best neuro you can for the best life with MS (or whatever else you've got).
Mary
My MS dx was second guessed by my neuro last year and I was tested for Devic's disease, similar in presentation to MS and in fact used to be considered a more severe form of MS. NMO-IgG test was neg, and neuro is confident I do have MS, despite high rate of false negs for the NMO test. I would guess that many pts with NMO were first thought to have MS.
Weighing the risks and benefits, I would rather unnecessarily take a first line DMD for say, a year and find out later I don't have MS, than to NOT take one for a year only to find out I DO have MS. My bigger concern with being treated for MS if I didn't actually have it is not the unnecessary use of a DMD, but rather the opportunity lost to treat early whatever disease I actuallly did have.
The first line DMD's (Avonex, Rebif, Copaxone, Betaseron) are immunomodulators, not supressants. Immunosuppressants to treat MS include meds like Novantrone and Tysabri, have more serious side effects than the firstr line meds, and I would be much more concerned about taking either of these for an extended period of time unnecessarily.
Weighing the risks and benefits, I would rather unnecessarily take a first line DMD for say, a year and find out later I don't have MS, than to NOT take one for a year only to find out I DO have MS. My bigger concern with being treated for MS if I didn't actually have it is not the unnecessary use of a DMD, but rather the opportunity lost to treat early whatever disease I actuallly did have.
The first line DMD's (Avonex, Rebif, Copaxone, Betaseron) are immunomodulators, not supressants. Immunosuppressants to treat MS include meds like Novantrone and Tysabri, have more serious side effects than the firstr line meds, and I would be much more concerned about taking either of these for an extended period of time unnecessarily.
There are so many MS mimics that I'm sure many people are misdiagnosed.
As for DMDs, I wouldn't want to take a drug that has potential side effects like: -------Drowsiness; flu-like symptoms (eg, headache, tiredness, fever, chills, back pain, muscle aches, weakness); pain, redness, or swelling at the injection site; stomach pain.
Seek medical attention right away if any of these SEVERE side effects occur when using Avonex Prefilled Syringes:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); change in vision; chest pain; dark urine; depression; easy bruising or bleeding; extreme tiredness or weakness; fast or irregular heartbeat; feeling cold or hot all the time; increased urination at night; infection at the injection site; seizures; shortness of breath; suicidal thoughts or behaviors; swollen ankles; unexplained change in weight; yellowing of the eyes or skin.
Avonex Vials
All medicines may cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome when using Avonex Vials:
Flu-like symptoms (eg, headache, tiredness, fever, chills, back pain, muscle aches, weakness); pain, redness, or swelling at the injection site; stomach pain.
Seek medical attention right away if any of these SEVERE side effects occur when using Avonex Vials:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); change in vision; chest pain; dark urine; depression; easy bruising or bleeding; extreme tiredness or weakness; fast or irregular heartbeat; feeling cold or hot all the time; increased urination at night; infection at the injection site; seizures; shortness of breath; suicidal thoughts or behaviors; swollen ankles; unexplained change in weight; yellowing of the eyes or skin.----------
Read more: http://www.drugs.com/sfx/avonex-side-effects.html#ixzz0s4V8ybyH
These drugs are immunosupressants. They're heavy hitters.
As for DMDs, I wouldn't want to take a drug that has potential side effects like: -------Drowsiness; flu-like symptoms (eg, headache, tiredness, fever, chills, back pain, muscle aches, weakness); pain, redness, or swelling at the injection site; stomach pain.
Seek medical attention right away if any of these SEVERE side effects occur when using Avonex Prefilled Syringes:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); change in vision; chest pain; dark urine; depression; easy bruising or bleeding; extreme tiredness or weakness; fast or irregular heartbeat; feeling cold or hot all the time; increased urination at night; infection at the injection site; seizures; shortness of breath; suicidal thoughts or behaviors; swollen ankles; unexplained change in weight; yellowing of the eyes or skin.
Avonex Vials
All medicines may cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome when using Avonex Vials:
Flu-like symptoms (eg, headache, tiredness, fever, chills, back pain, muscle aches, weakness); pain, redness, or swelling at the injection site; stomach pain.
Seek medical attention right away if any of these SEVERE side effects occur when using Avonex Vials:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); change in vision; chest pain; dark urine; depression; easy bruising or bleeding; extreme tiredness or weakness; fast or irregular heartbeat; feeling cold or hot all the time; increased urination at night; infection at the injection site; seizures; shortness of breath; suicidal thoughts or behaviors; swollen ankles; unexplained change in weight; yellowing of the eyes or skin.----------
Read more: http://www.drugs.com/sfx/avonex-side-effects.html#ixzz0s4V8ybyH
These drugs are immunosupressants. They're heavy hitters.
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