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Relapsing Remitting vs Progressive MS
Quix: I'll echo everybody else's comments that I'm sorry to hear that your neuro confirmed that you lost some strength and coordination, but glad that you have a good neuro to work with.
You said that he thought you were still relapsing-remitting. Could you explain the criteria are for telling the difference between RR and progressive? The more I read about this, the less I can tell what category I fit into, although this may be my incomplete understanding. For quite a while, I had the (wrong) impression that remission meant that the symptoms completely or almost completely went away and you were basically normal.
The MS neuro said I'm probably RR, but he also said that not everyone fits neatly into those categories. He tried to explain (twice) why he thought I was RR, but when I looked just as bewildered at the end of his explanations as at the beginning, I think he gave up. I'm not sure why I'm so dense about this, but his explanation made absolutely no sense to me.
You said that he thought you were still relapsing-remitting. Could you explain the criteria are for telling the difference between RR and progressive? The more I read about this, the less I can tell what category I fit into, although this may be my incomplete understanding. For quite a while, I had the (wrong) impression that remission meant that the symptoms completely or almost completely went away and you were basically normal.
The MS neuro said I'm probably RR, but he also said that not everyone fits neatly into those categories. He tried to explain (twice) why he thought I was RR, but when I looked just as bewildered at the end of his explanations as at the beginning, I think he gave up. I'm not sure why I'm so dense about this, but his explanation made absolutely no sense to me.
Some of these have already been referred to but I am putting them again so they are all together.
1. Relapsing/Remitting Multiple Sclerosis (RRmultiple sclerosis):
This is characterised by relapses (also known as exacerbations) during which time new symptoms can appear and old ones resurface or worsen. The relapses are followed by periods of remission, during which time the person fully or partially recovers from the deficits acquired during the relapse. Relapses can last for days, weeks or months and recovery can be slow and gradual or almost instantaneous. The vast majority of people presenting with Multiple Sclerosis are first diagnosed with relapsing/remitting. This is typically when they are in their twenties or thirties, though diagnoses much earlier or later are known. Around twice as many women as men present with this variety.
2. Secondary Progressive Multiple Sclerosis (SPmultiple sclerosis):
In this form of multiple sclerosis a person who initially had relapsing-remitting multiple sclerosis begins to develop a gradual deterioration in nerve function, with or without relapses. After a number of years many people who have had relapsing/remitting multiple sclerosis will pass into a secondary progressive phase of the disease. This is characterised by a gradual worsening of the disease between relapses. In the early phases of Secondary Progressive, the person may still experience a few relapses but after a while these merge into a general progression. People with secondary progressive may experience good and bad days or weeks, but, apart from some remission following relapsing episodes, no real recovery. After 10 years, 50% of people with relapsing/remitting multiple sclerosis will have developed secondary progressive. By 25 to 30 years, that figure will have risen to 90%.
3. Progressive Relapsing Multiple Sclerosis (PRmultiple sclerosis):
Progressive relapsing multiple sclerosis shows clear progression in the level of disability from the time symptoms first begin, but with episodes of clear relapses that may or may not be associated with some recovery following the acute episode. This form of multiple sclerosis follows a progressive course from onset, punctuated by relapses. There is significant recovery immediately following a relapse but between relapses there is a gradual worsening of symptoms.
4. Primary Progressive Multiple Sclerosis (PPmultiple sclerosis):
This type of multiple sclerosis is characterised by a gradual progression of the disease from its onset with no remissions at all. There may be periods of a leveling off of disease activity and, as with secondary progressive, there may be good and bad days or weeks. PPmultiple sclerosis differs from Relapsing/Remitting and Secondary Progressive in that onset is typically in the late thirties or early forties, men are as likely women to develop it and initial disease activity is in the spinal cord and not in the brain. Primary Progressive multiple sclerosis often migrates into the brain, but is less likely to damage brain areas than relapsing/remitting or secondary progressive - for example, people with Primary Progressive are less likely to develop cognitive problems.
Other terms often used to describe forms of multiple sclerosis are:
Benign multiple sclerosis:
This is a sub-group of relapsing/remitting. It is used to describe the disease in people who have had multiple sclerosis for fifteen or more years without picking up any serious and enduring disability. One of the neurologists that I saw put it at ten years. It's a bit of a false label really and people with benign multiple sclerosis are often reclassified as Secondary Progressive after a number of years.
Malignant multiple sclerosis:
Also known as Marburg's Variant and Acute Multiple Sclerosis. This is a label given to forms of multiple sclerosis where the disease progresses very rapidly from onset leading to severe disability within a relatively short period of time. Fortunately, this form of multiple sclerosis is extremely rare.
Chronic Progressive multiple sclerosis:
Primary Progressive and Secondary Progressive used to be lumped together as Chronic Progressive (CPmultiple sclerosis) but this term is no longer officially recognised although you will still see it referred to now and then.
Transitional/Progressive multiple sclerosis:
Another form of the disease which is sometimes referred to but not widely used, is Transitional/Progressive (TPmultiple sclerosis). This is characterised by a progressive course beginning many years after an isolated bout.
Devic's Disease:
Also known as Neuromyelitis Optica, Devic's disease is a related condition to multiple sclerosis that is characterised by an attack of Optic Neuritis in both eyes followed by severe inflammation of the spinal cord (Transverse Myelopathy).
Balo's concentric sclerosis:
This is another very rare disease that resembles multiple sclerosis. Clinically, it is very hard to distinguish Balo's concentric sclerosis from multiple sclerosis but MRI scans show the lesions in Balo's to be concentric rings of intact myelin and demyelinated zones. It is more common in China and the Philippines than elsewhere.
1. Relapsing/Remitting Multiple Sclerosis (RRmultiple sclerosis):
This is characterised by relapses (also known as exacerbations) during which time new symptoms can appear and old ones resurface or worsen. The relapses are followed by periods of remission, during which time the person fully or partially recovers from the deficits acquired during the relapse. Relapses can last for days, weeks or months and recovery can be slow and gradual or almost instantaneous. The vast majority of people presenting with Multiple Sclerosis are first diagnosed with relapsing/remitting. This is typically when they are in their twenties or thirties, though diagnoses much earlier or later are known. Around twice as many women as men present with this variety.
2. Secondary Progressive Multiple Sclerosis (SPmultiple sclerosis):
In this form of multiple sclerosis a person who initially had relapsing-remitting multiple sclerosis begins to develop a gradual deterioration in nerve function, with or without relapses. After a number of years many people who have had relapsing/remitting multiple sclerosis will pass into a secondary progressive phase of the disease. This is characterised by a gradual worsening of the disease between relapses. In the early phases of Secondary Progressive, the person may still experience a few relapses but after a while these merge into a general progression. People with secondary progressive may experience good and bad days or weeks, but, apart from some remission following relapsing episodes, no real recovery. After 10 years, 50% of people with relapsing/remitting multiple sclerosis will have developed secondary progressive. By 25 to 30 years, that figure will have risen to 90%.
3. Progressive Relapsing Multiple Sclerosis (PRmultiple sclerosis):
Progressive relapsing multiple sclerosis shows clear progression in the level of disability from the time symptoms first begin, but with episodes of clear relapses that may or may not be associated with some recovery following the acute episode. This form of multiple sclerosis follows a progressive course from onset, punctuated by relapses. There is significant recovery immediately following a relapse but between relapses there is a gradual worsening of symptoms.
4. Primary Progressive Multiple Sclerosis (PPmultiple sclerosis):
This type of multiple sclerosis is characterised by a gradual progression of the disease from its onset with no remissions at all. There may be periods of a leveling off of disease activity and, as with secondary progressive, there may be good and bad days or weeks. PPmultiple sclerosis differs from Relapsing/Remitting and Secondary Progressive in that onset is typically in the late thirties or early forties, men are as likely women to develop it and initial disease activity is in the spinal cord and not in the brain. Primary Progressive multiple sclerosis often migrates into the brain, but is less likely to damage brain areas than relapsing/remitting or secondary progressive - for example, people with Primary Progressive are less likely to develop cognitive problems.
Other terms often used to describe forms of multiple sclerosis are:
Benign multiple sclerosis:
This is a sub-group of relapsing/remitting. It is used to describe the disease in people who have had multiple sclerosis for fifteen or more years without picking up any serious and enduring disability. One of the neurologists that I saw put it at ten years. It's a bit of a false label really and people with benign multiple sclerosis are often reclassified as Secondary Progressive after a number of years.
Malignant multiple sclerosis:
Also known as Marburg's Variant and Acute Multiple Sclerosis. This is a label given to forms of multiple sclerosis where the disease progresses very rapidly from onset leading to severe disability within a relatively short period of time. Fortunately, this form of multiple sclerosis is extremely rare.
Chronic Progressive multiple sclerosis:
Primary Progressive and Secondary Progressive used to be lumped together as Chronic Progressive (CPmultiple sclerosis) but this term is no longer officially recognised although you will still see it referred to now and then.
Transitional/Progressive multiple sclerosis:
Another form of the disease which is sometimes referred to but not widely used, is Transitional/Progressive (TPmultiple sclerosis). This is characterised by a progressive course beginning many years after an isolated bout.
Devic's Disease:
Also known as Neuromyelitis Optica, Devic's disease is a related condition to multiple sclerosis that is characterised by an attack of Optic Neuritis in both eyes followed by severe inflammation of the spinal cord (Transverse Myelopathy).
Balo's concentric sclerosis:
This is another very rare disease that resembles multiple sclerosis. Clinically, it is very hard to distinguish Balo's concentric sclerosis from multiple sclerosis but MRI scans show the lesions in Balo's to be concentric rings of intact myelin and demyelinated zones. It is more common in China and the Philippines than elsewhere.
Sorry, I don' t have any answers about the different types (ten or thirty or however many) or where to find more info, although I'm curious enough that I might poke around and see if I can find anything.
As far as free reading of books goes, I would try your local library. Even if they don't have the book you want, most of the time they can get it from another library through interlibrary loan.
As far as free reading of books goes, I would try your local library. Even if they don't have the book you want, most of the time they can get it from another library through interlibrary loan.
Thanks for the explanation. I think you're right that the doctor is more concerned about rate of progression than type.
I think part of my confusion is that before he sent me to see the MS neuro, the neuro who diagnosed me told me that I would definitely get meds (I think I asked him like three times if he was sure there were meds that would work for me since I was convinced at the time that I had primary progressive and he said he was sure--of course, he probably didn't want to give me the bad news about MS and then say, oh well, tough luck, we're not going to do anything about it). And after reading different things on this forum and elsewhere about the progress of MS even when it doesn't seem to be active, I had really worked to overcome my irrational knee-jerk reluctance to take ongoing medication and vowed to go to the appointment with an open mind and see what the MS neuro recommended.
Then I got to the appointment and the MS neuro threw me for a total loop by saying that he didn't recommend any meds at this time in my case. He wants to do repeat MRI's in the spring and reevaluate then. I was actually relieved and felt like it was the right decision (although I accept the fact that I may live to regret it).
Even though the neuro said I had RR, he also seems to think that the meds are not likely to work very well with my pattern so far (if I remember correctly because I don't have a lot of frequent, acute flare-ups--well, none really). He did say that if I hadn't had these symptoms for six years and had been just diagnosed, he would have put me on the meds right away because they can't predict who is going to progress. So I don't know that even if the MRI or anything else shows progression whether he thinks the meds will help me so much as it pushes the balance in favor of taking action, however unlikely it is to help.
I guess I'll just have to wait and see...
I think part of my confusion is that before he sent me to see the MS neuro, the neuro who diagnosed me told me that I would definitely get meds (I think I asked him like three times if he was sure there were meds that would work for me since I was convinced at the time that I had primary progressive and he said he was sure--of course, he probably didn't want to give me the bad news about MS and then say, oh well, tough luck, we're not going to do anything about it). And after reading different things on this forum and elsewhere about the progress of MS even when it doesn't seem to be active, I had really worked to overcome my irrational knee-jerk reluctance to take ongoing medication and vowed to go to the appointment with an open mind and see what the MS neuro recommended.
Then I got to the appointment and the MS neuro threw me for a total loop by saying that he didn't recommend any meds at this time in my case. He wants to do repeat MRI's in the spring and reevaluate then. I was actually relieved and felt like it was the right decision (although I accept the fact that I may live to regret it).
Even though the neuro said I had RR, he also seems to think that the meds are not likely to work very well with my pattern so far (if I remember correctly because I don't have a lot of frequent, acute flare-ups--well, none really). He did say that if I hadn't had these symptoms for six years and had been just diagnosed, he would have put me on the meds right away because they can't predict who is going to progress. So I don't know that even if the MRI or anything else shows progression whether he thinks the meds will help me so much as it pushes the balance in favor of taking action, however unlikely it is to help.
I guess I'll just have to wait and see...
I heard the same as you, as far as the forms. But, recently I read somewhere that there are as many as thirty types of MS. I guess they are referring to thirty MS disease forms such as Devic's and Balo's concentric sclerosis, etc. I am not sure. I guess I need to get a good book because I have not found open and free reading which details or even lists the thirty different types. Do you or anyone know of a good read that discusses the supposedly thirty different types of MS and their symptoms and diagnosis? I would appreciate the input if you have it! Thank you!
Thank you SO much for helping us understand this. It is so confusing. I guess you have been told that by others before. I think they ought to simply the categories of MS, don't you?
Lately dear man, I stay confused...Thank you again. You are a treasure.
Heather
Lately dear man, I stay confused...Thank you again. You are a treasure.
Heather
The principle difference between Relasping Remitting and Primary Progressive MS is how it starts.
Primary Progressive is characterized as a steady worsening of symptoms that may from time to time plateau or ease up a bit.
Relapsing Remitting and its older brother Secondary Progressive are the same disease. Secondary progressive is like primary progressive except it always proceeds Relapsing Remitting.
Relapsing Remitting is characterized by flareups, attacks, exacerbations that fully or partially remit. These attacks can be seperated by as little as a month to decades, with 9-18 months being average. For many, particularly the younger, the attacks will completely remit. But over time or for later onset, the more likely some symptoms will persist after the attack remits. This is normal.
Many RR suffers who have leftover symptoms do improve dramatically after the attack remits but will suffer mild variations in their leftover symptoms from day to day. Usually the RR will ease into Secondary Progressive where attacks lessen or stop altogether and symptoms persist and worsen. Tis often is decades after the initial attack.
Many doctors believe that Primary Progressive and RR/SP MS are actually two different diseases.
The MS society believes that only about 10% are Primary. One thing to note about Primary and you probably already know this, is that it has very few treatment options and does not respond to interferons, However many who do have Primary have a very slow progression and will actually fair better than their more treatable RR/SP counterparts.
So your doctor is probably not concerned about which flavor you have but how rapidly you progress, and only time will answer that question.
JonM
Primary Progressive is characterized as a steady worsening of symptoms that may from time to time plateau or ease up a bit.
Relapsing Remitting and its older brother Secondary Progressive are the same disease. Secondary progressive is like primary progressive except it always proceeds Relapsing Remitting.
Relapsing Remitting is characterized by flareups, attacks, exacerbations that fully or partially remit. These attacks can be seperated by as little as a month to decades, with 9-18 months being average. For many, particularly the younger, the attacks will completely remit. But over time or for later onset, the more likely some symptoms will persist after the attack remits. This is normal.
Many RR suffers who have leftover symptoms do improve dramatically after the attack remits but will suffer mild variations in their leftover symptoms from day to day. Usually the RR will ease into Secondary Progressive where attacks lessen or stop altogether and symptoms persist and worsen. Tis often is decades after the initial attack.
Many doctors believe that Primary Progressive and RR/SP MS are actually two different diseases.
The MS society believes that only about 10% are Primary. One thing to note about Primary and you probably already know this, is that it has very few treatment options and does not respond to interferons, However many who do have Primary have a very slow progression and will actually fair better than their more treatable RR/SP counterparts.
So your doctor is probably not concerned about which flavor you have but how rapidly you progress, and only time will answer that question.
JonM
Sorry, I think that last comment came out a bit wrong (although you probably know what I meant). I'm not glad you're confused. I just feel like less of an idiot since someone who knows a lot more about MS than I do finds this distinction a bit unclear.
I have been reading the book Curing MS: How Science is Solving the Mysteries of Multiple Sclerosis by Howard L. Weiner (I'm getting a lot out of--it's written for laypeople and has enough of a narrative that I don't get too bogged down in all the technical stuff).
Anyway, on page 244, he makes the interesting statement that:
"There are different subtypes of MS because of the many complex factors that come together to cause MS. Also, there are different ways the immune system can attack the brain, and these different ways can cause different types of MS. How many subtypes of MS are there? Claudia Lucchinetti and Hans Lassmann have pathologically define four subtypes [the four we are generally familiar with???] ... and there may be as many as ten [ten?!!]. One of the main challenges of MS research is to understand the basis for the different subtypes to that treatment can be tailored to the subtype."
I have been reading the book Curing MS: How Science is Solving the Mysteries of Multiple Sclerosis by Howard L. Weiner (I'm getting a lot out of--it's written for laypeople and has enough of a narrative that I don't get too bogged down in all the technical stuff).
Anyway, on page 244, he makes the interesting statement that:
"There are different subtypes of MS because of the many complex factors that come together to cause MS. Also, there are different ways the immune system can attack the brain, and these different ways can cause different types of MS. How many subtypes of MS are there? Claudia Lucchinetti and Hans Lassmann have pathologically define four subtypes [the four we are generally familiar with???] ... and there may be as many as ten [ten?!!]. One of the main challenges of MS research is to understand the basis for the different subtypes to that treatment can be tailored to the subtype."
Thanks for your response. I'm so glad to know I'm not the only one who finds this confusing!
Happy holidays to you and yours, too.
Sho
Happy holidays to you and yours, too.
Sho
You are SO right. I am totally with you...the more I read about the differences between the different "stages" of MS, the more confused that I become.
Of course you know that relapsing/remitting is just that. With Progressive MS, these relapses and remissions become less distinct and happen less often. With Progressive MS, which I am now told that I have or headed into, the symptoms "stick around" and slightly worsen over time.
This is the way that "I" understand it's meaning. When Quix reads this post, she will be able to explain this difference much better. Despite the doctors telling me that after 12 years I am heading into the progressive category, there are going to put me back on one of the MS modulating drugs. I will be going on Copaxone as soon as my MRI results come in this morning.
Quix....we are waiting for some expert advice and comments from you when you are feeling well enough to approach this challenge. I know that you can't "look" at the computer screen too long, due to your eye problems, so i just ask that you do the best you can.
This is a good question that Sho asked. I am very interested in your reply.
All the best Sho. Happy Holidays to you and your family.
Big (((HUGS))))
Heather
Of course you know that relapsing/remitting is just that. With Progressive MS, these relapses and remissions become less distinct and happen less often. With Progressive MS, which I am now told that I have or headed into, the symptoms "stick around" and slightly worsen over time.
This is the way that "I" understand it's meaning. When Quix reads this post, she will be able to explain this difference much better. Despite the doctors telling me that after 12 years I am heading into the progressive category, there are going to put me back on one of the MS modulating drugs. I will be going on Copaxone as soon as my MRI results come in this morning.
Quix....we are waiting for some expert advice and comments from you when you are feeling well enough to approach this challenge. I know that you can't "look" at the computer screen too long, due to your eye problems, so i just ask that you do the best you can.
This is a good question that Sho asked. I am very interested in your reply.
All the best Sho. Happy Holidays to you and your family.
Big (((HUGS))))
Heather
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