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Transitioning from RRMS to SPMS (correction)
Recently we have had several people ask how one knows when you move from RRMS to SPMS. The first thing we must all know is that this is a somewhat subjective assessment that should be made by our neurologist. The second thing you need to know is that it is an assessment made on the basis of the patient's symptoms and disability - not on the basis of the MRI.
Studies show that about 50% of all people with RRMS will progress to SPMS during their lives. If we all lived another 40 years or so, that number might be much higher, as the current thought is that SPMS is the next step in the disease process of Relapsing Remitting MS. One of the main goals in the current use of DMDs is to slow this transition.
There are two main patterns of SPMS. One is that the relapses stop and the symptoms just inexorably continue to worsen causing ever-increasing disability. This is the easier to recognize. The person just gets worse and worse , but now does not have periods of noticeable improvement or stabilization. Very typically, their ability to walk unassisted goes downhill steadily. Neurologists have scales by which they measure disability. The most common that we see is called the EDSS. I think this would make a great HP for someone to do.
In this type the person with MS can no longer really pinpoint the dates when new things appeared, and they notice that, once a symptom appears, it never seems to go away. There may be brief periods where symptoms stay the same, but over time they just continue to worsen.
The other pattern is one in which there continue to be relapses - where there is a noticeable worsening of old symptoms or appearance of new symptoms. However, between these relapses, they no longer see improvement in the symptoms that are already there. There is a continual increase in the permanent disability - usually defined as the ability to do the activities of life whether that is walk unasisted, dress or bathe unassisted, prepare meals and eat, etc.
The person with this relapsing SPMS will still notice periods where symptoms suddenly appear or worsen, but in between these relapses they notice that other problems are still sliding downhill. As an example, they may now have an onset of severe vertigo, but the old leg weakness slowly worsens so that they need more rests, then a cane, then a wheelchair for longer walks and finally a wheelchair most of the time. Or it may not progress fast, but they notice that it is taking longer and longer to walk from the street into the store, or that they are getting less and less done on each shopping trip. Mainly, now, they see that symptoms never really improve once they have appeared.
Researchers feel that the onset of the first kind of Secondary Progressive MS indicates that the process of nerve death is the most prominent thing happening. There isn't so much inflammation causing myelin damage and definitely no myelin repair happening. In this kind of SPMS the firstline DMDs have not shown much help. The docs will begin to consider the second line meds, Tysabri and Novantrone.
In the kind of SPMS that still has a relapsing pattern, though, there still appears to be a component of inflammatory attacks on the myelin. In this second kind of SPMS the neuros will often continue to use a DMD to try to slow the process. However, the relapsing phase of SPMS is typically expected to burn out and turn into the pure progressing phase eventually.
The MRI does show things also, but the transition from RRMS to SPMS is not a determination made by MRI - just bolstered by it. The lesion load may grow more rapidly without resolution of any lesions. Also, T1 black holes may become more prominent or more numerous. Gray matter lesions may multiply and the big finding is visible atrophy of the brain matter, such that you can see that so many neurons have died that the brain is literally shrinking.
I am trying to describe patterns here and not specific instances.
Questions?
Quix
Studies show that about 50% of all people with RRMS will progress to SPMS during their lives. If we all lived another 40 years or so, that number might be much higher, as the current thought is that SPMS is the next step in the disease process of Relapsing Remitting MS. One of the main goals in the current use of DMDs is to slow this transition.
There are two main patterns of SPMS. One is that the relapses stop and the symptoms just inexorably continue to worsen causing ever-increasing disability. This is the easier to recognize. The person just gets worse and worse , but now does not have periods of noticeable improvement or stabilization. Very typically, their ability to walk unassisted goes downhill steadily. Neurologists have scales by which they measure disability. The most common that we see is called the EDSS. I think this would make a great HP for someone to do.
In this type the person with MS can no longer really pinpoint the dates when new things appeared, and they notice that, once a symptom appears, it never seems to go away. There may be brief periods where symptoms stay the same, but over time they just continue to worsen.
The other pattern is one in which there continue to be relapses - where there is a noticeable worsening of old symptoms or appearance of new symptoms. However, between these relapses, they no longer see improvement in the symptoms that are already there. There is a continual increase in the permanent disability - usually defined as the ability to do the activities of life whether that is walk unasisted, dress or bathe unassisted, prepare meals and eat, etc.
The person with this relapsing SPMS will still notice periods where symptoms suddenly appear or worsen, but in between these relapses they notice that other problems are still sliding downhill. As an example, they may now have an onset of severe vertigo, but the old leg weakness slowly worsens so that they need more rests, then a cane, then a wheelchair for longer walks and finally a wheelchair most of the time. Or it may not progress fast, but they notice that it is taking longer and longer to walk from the street into the store, or that they are getting less and less done on each shopping trip. Mainly, now, they see that symptoms never really improve once they have appeared.
Researchers feel that the onset of the first kind of Secondary Progressive MS indicates that the process of nerve death is the most prominent thing happening. There isn't so much inflammation causing myelin damage and definitely no myelin repair happening. In this kind of SPMS the firstline DMDs have not shown much help. The docs will begin to consider the second line meds, Tysabri and Novantrone.
In the kind of SPMS that still has a relapsing pattern, though, there still appears to be a component of inflammatory attacks on the myelin. In this second kind of SPMS the neuros will often continue to use a DMD to try to slow the process. However, the relapsing phase of SPMS is typically expected to burn out and turn into the pure progressing phase eventually.
The MRI does show things also, but the transition from RRMS to SPMS is not a determination made by MRI - just bolstered by it. The lesion load may grow more rapidly without resolution of any lesions. Also, T1 black holes may become more prominent or more numerous. Gray matter lesions may multiply and the big finding is visible atrophy of the brain matter, such that you can see that so many neurons have died that the brain is literally shrinking.
I am trying to describe patterns here and not specific instances.
Questions?
Quix
I just read your post, and I hear and feel your pain.....
Friend, I want to assure you, you are not nuts!!
After my last appointment, I truly know the feeling!
I have bleeding off and on in my brain and then the docs decided I also have MS.
but the last doc I went to decided I was nuts, not sick.
My fam doc was so upset she said I will not see any other docs here in Columbia.
I am amazed, because i was on a 6-12 mo waiting list to get in Duke.
After that God awful appointment here, she was able to get me an appointment
the 11th at Duke!
I'm praying and trusting God will clearly show the Doctors what is wrong with
me! I'm ready to take shots or whatever I need to. Just to get it started!!
I'm so happy that my fam doc knows me and knows I've never been ill and don't
WANT to be ill!!! Hugs NiCee
Friend, I want to assure you, you are not nuts!!
After my last appointment, I truly know the feeling!
I have bleeding off and on in my brain and then the docs decided I also have MS.
but the last doc I went to decided I was nuts, not sick.
My fam doc was so upset she said I will not see any other docs here in Columbia.
I am amazed, because i was on a 6-12 mo waiting list to get in Duke.
After that God awful appointment here, she was able to get me an appointment
the 11th at Duke!
I'm praying and trusting God will clearly show the Doctors what is wrong with
me! I'm ready to take shots or whatever I need to. Just to get it started!!
I'm so happy that my fam doc knows me and knows I've never been ill and don't
WANT to be ill!!! Hugs NiCee
Quix,
Thanks for all you do!
Shelley,
I've been told I've had MS 2 time and had the dx taken away 2 times. Now I'm stuck with possible MS and we'll know for sure in 5 years since all the mimics have been ruled out. Maybe I have some unknown rare disease that only I have. I doubt it though.
On one hand it doesn't bother me because they do not have a cure for any and I'm done with the greediness of the big pharm, so they wouldn't make any $ off of me anyway regardless of what it really ends up being.
Then on the other hand, I am not getting any better and its nice to just KNOW what is causing the decline. Plus as someone else mentioned, you need that info to get help sometimes. The "my doctor is waiting 5 years to decide if I have MS or not" is not going to work.
Sometimes it feels like even getting the or any dx is a scam as they keep sending your for the same tests over and over again and you get nowhere except to frustration land......lol. What a waste of resources, time & $. Mostly my $ because I have terrible insurance.
I'd throw in the towel but I want that confirmation that I am not nuts!
Thanks for all you do!
Shelley,
I've been told I've had MS 2 time and had the dx taken away 2 times. Now I'm stuck with possible MS and we'll know for sure in 5 years since all the mimics have been ruled out. Maybe I have some unknown rare disease that only I have. I doubt it though.
On one hand it doesn't bother me because they do not have a cure for any and I'm done with the greediness of the big pharm, so they wouldn't make any $ off of me anyway regardless of what it really ends up being.
Then on the other hand, I am not getting any better and its nice to just KNOW what is causing the decline. Plus as someone else mentioned, you need that info to get help sometimes. The "my doctor is waiting 5 years to decide if I have MS or not" is not going to work.
Sometimes it feels like even getting the or any dx is a scam as they keep sending your for the same tests over and over again and you get nowhere except to frustration land......lol. What a waste of resources, time & $. Mostly my $ because I have terrible insurance.
I'd throw in the towel but I want that confirmation that I am not nuts!
I don't think it ever hurts to tell the new neuro up front that you are so frightened of never having an answer, or even a good guess, about whatever it is that is stealing your life's abilities.
Q
Q
This was so informative.. Good reading for tonight that's for sure. I'm so worried for my third neuro appt. I' m scared of being told that they don't know what is wrong when I truly feel like my body is telling me so much.
I don't feel like I get a break anymore from the symptoms. They seem to be there all the time but just varying in intensity. The muscle spasms, fatigue, leg and arm heaviness brain fog.... I'm just so blah lately finding it hard to get anything done.
I will continue to stay positive for neuro #3 opinion... and my upcoming MRI in 4 days.
Thanks for your info!!
Shelley
I don't feel like I get a break anymore from the symptoms. They seem to be there all the time but just varying in intensity. The muscle spasms, fatigue, leg and arm heaviness brain fog.... I'm just so blah lately finding it hard to get anything done.
I will continue to stay positive for neuro #3 opinion... and my upcoming MRI in 4 days.
Thanks for your info!!
Shelley
I than all of you, Jen, Pat, Brit and Ren for your imput. I am planning a whole blurb on the "negative" info out there that some docs and health systems may be leaning on as they do or do not diagnose and treat us.
This will be things like the fairly high documented percentage of people misdiganosed with MS (often quoted as 10% to 20%) and the consequences of such a misdiagnosis. In the article that I posted the link for, Dr. Poser seemed truly horrified at the ultimate of such a diagnosis - he mentions a woman on Tysabri who died of PML - who was found NOT to have MS at autopsy. This may have changed his whole point of view.
I think I see it a little differently. When the work up has been thorough should not we - as patients - be allowed into the decision process? If it is far more likely than not that we have MS, shouldn't we be given the "informed consent" of electing to be treated - at least with the more benign DMDs - and state that we understand that our diagnosis is not a "slam dunk", but wish the chance to slow the disease anyway?
This attitude of the MS community was largely what was responsible for bringing Tysabri back. The community demanded the choice. Perhaps before starting a med like Tysabri there should be another review of the clinical (history and physical) and the rule out of mimics, to ensure that we know as much as we can.
We know that some people will never want to take that chance - prefering the "enemy that is known" (their obvious deterioration and growing disability) over the "enemy that is unknown (the small chance of a fatal outcome with the treatment). But, others will want to fight as hard as possible to try to salvage what remains of their "ability". Shouldn't our attitudes be figured in?
Personally, if faced with an obvious, downward course (close to 100% chance of severe problems) I would choose Tysabri (0.1%) to try to stop the MonSter.
I think the discussion is very important.
This will include some oppining (oppionating. :))) on my part.
Quix
This will be things like the fairly high documented percentage of people misdiganosed with MS (often quoted as 10% to 20%) and the consequences of such a misdiagnosis. In the article that I posted the link for, Dr. Poser seemed truly horrified at the ultimate of such a diagnosis - he mentions a woman on Tysabri who died of PML - who was found NOT to have MS at autopsy. This may have changed his whole point of view.
I think I see it a little differently. When the work up has been thorough should not we - as patients - be allowed into the decision process? If it is far more likely than not that we have MS, shouldn't we be given the "informed consent" of electing to be treated - at least with the more benign DMDs - and state that we understand that our diagnosis is not a "slam dunk", but wish the chance to slow the disease anyway?
This attitude of the MS community was largely what was responsible for bringing Tysabri back. The community demanded the choice. Perhaps before starting a med like Tysabri there should be another review of the clinical (history and physical) and the rule out of mimics, to ensure that we know as much as we can.
We know that some people will never want to take that chance - prefering the "enemy that is known" (their obvious deterioration and growing disability) over the "enemy that is unknown (the small chance of a fatal outcome with the treatment). But, others will want to fight as hard as possible to try to salvage what remains of their "ability". Shouldn't our attitudes be figured in?
Personally, if faced with an obvious, downward course (close to 100% chance of severe problems) I would choose Tysabri (0.1%) to try to stop the MonSter.
I think the discussion is very important.
This will include some oppining (oppionating. :))) on my part.
Quix
When I was diagnosed my local neuro disagreed with me starting a DMD and quoted a lot of the information Quix has posted. He told me that DMDs only help in 30 % of the cases and was I sure that I wanted to stick myself everyday for only 30%.
I responded that I would take my chances and would opt for at least a 30% chance of success or help with slowing the progression. My MS neuro prefers his patients to use a DMD but told me he would still treat me for symptoms even if I opted not to take a DMD due to the data Quix has presented.
I do think my MS neuro isn't as pessimistic as my local neuro but my MS neuro is older (60's) and has seen the difference DMDs make in the ultimate outcome in MS. He told me that fewer patients now wind up with total disability and his thought this was due to DMDs.
Just my two cents,
Ren
I responded that I would take my chances and would opt for at least a 30% chance of success or help with slowing the progression. My MS neuro prefers his patients to use a DMD but told me he would still treat me for symptoms even if I opted not to take a DMD due to the data Quix has presented.
I do think my MS neuro isn't as pessimistic as my local neuro but my MS neuro is older (60's) and has seen the difference DMDs make in the ultimate outcome in MS. He told me that fewer patients now wind up with total disability and his thought this was due to DMDs.
Just my two cents,
Ren
I found this really interesting. I now live in the USA but I am English and have lived here a little over 3 years. I know for a fact that should I have seen a neuro in the UK ( after a 12 month wait list) I would have probably still not been diagnosed and not had meds as an option. However I have had great care here,but I cant get past the fact that the drug companies are so intune with the Docs that its all a big money making scam. I hope I am wrong, however I dont see people in England suffering anymore than here despite the meds being more difficult to get due to NHS costing. I hope that time will tell.....
Thanks for answering so honestly, as a researcher and scientist myself I have had concerns for sometime about the extremes in attitude in US vs UK towards the use of DMDs. I think I have spent quite some time not delving too deeply into the research in this area since I seem to be still in the 'if I deny this it will go away' stage.
However, your answer is strangely reassuring since without hard evidence to the contrary I can at least believe that my medical team is on my side. Especially since she was willing to count some quite transient sx as relapses in order to get DMDs perscribed for me if I am desperate to try them. To this end I will be seeing the neuro again in January.
I agree that 'silent' is an unfortunate term but then along with 'mild' that seems to be the aproach I have had to suffer. Both terms do not fully describe how my sx have affected me but then as my neuro psych put it 'if you led a very rich life and MS has stopped this then no matter how mild the sx impact is huge'. Although I still felt that this undermined the full effect of sx.
Once more thanks and I will now read the article at the link Quix posted and form an even more confused view.
Happy and Healthy 2010.
Pat x
However, your answer is strangely reassuring since without hard evidence to the contrary I can at least believe that my medical team is on my side. Especially since she was willing to count some quite transient sx as relapses in order to get DMDs perscribed for me if I am desperate to try them. To this end I will be seeing the neuro again in January.
I agree that 'silent' is an unfortunate term but then along with 'mild' that seems to be the aproach I have had to suffer. Both terms do not fully describe how my sx have affected me but then as my neuro psych put it 'if you led a very rich life and MS has stopped this then no matter how mild the sx impact is huge'. Although I still felt that this undermined the full effect of sx.
Once more thanks and I will now read the article at the link Quix posted and form an even more confused view.
Happy and Healthy 2010.
Pat x
Teva has done research showing that Copaxone slows disease progression as well as relapses... but I'm still dubious about their data.
There's a great article in last month's Wired... I think... about statistics and skewed data. I wish I could find it, because I can't remember the details. But essentially studies with only moderate success rates may have more of an error factor than we previously thought. What's seen as positive results is actually random chance.
This is why I'm not more gung-ho about the current DMDs on the market. Only 30% reduction in relapses, and that's for all of them. Not very promising.
There's a great article in last month's Wired... I think... about statistics and skewed data. I wish I could find it, because I can't remember the details. But essentially studies with only moderate success rates may have more of an error factor than we previously thought. What's seen as positive results is actually random chance.
This is why I'm not more gung-ho about the current DMDs on the market. Only 30% reduction in relapses, and that's for all of them. Not very promising.
No one is going to like my answer here. I looked into the hard data that the DMDs do slow progression. A few of the studies have claimed to show this, but subsequent criticisms (by pretty awesome minds in the MS field) have shown the evidence to be weak - not wrong or absent, but weak.
What I found were articles that anyone could stand on to support the policy that the MS Specialist nurse was holding to. I will write up one later. It was written by Charles Poser (of the Poser Criteria) and he even recommended holding off treating for a year.
Now, it could be that he is a member of a very small group that feels we should pull back from what he calls the "frenzy to treat" in the US. (lol, maybe he is in cahoots with the Mayo.) Who knows?
I tried to find good scientific articles showing that, at least in a percentage, the process of disease progress was slowed. It looks like this data is not strong. The slowing of the inflammatory process of relapses is not hard-linked to the steady progression of disability. This is something we all know. Some studies seem to indicate that if we slow the relapses we will slow the disability, but others indicate the two phenomena proceed independently of each other.
On the other hand it has not been disproved. All of this seems to be a return to the nihilistic (All Effort is Futile) attitude of the past. I think this is too bad and would result in a significant loss of our Quality of Life.
Your nurse's remark that the progression of diability is "silent" is a poor choice of words at best. She isn't living with the reality and "noise" of obviously deteriorating function. I was clearly disheartened to read this article by Poser. His words are carrying some weight and give those many of our "troublesome" neuros a leg to stand on. Still, we need to know what is being said out there and by whom.
Here is that article:
http://www.cmaj.ca/cgi/reprint/162/1/83.pdf
:((
Quix
She seems to be quoting a letter to the editor of NEJM - which was not a statement of fact, but a on opinion.
What I found were articles that anyone could stand on to support the policy that the MS Specialist nurse was holding to. I will write up one later. It was written by Charles Poser (of the Poser Criteria) and he even recommended holding off treating for a year.
Now, it could be that he is a member of a very small group that feels we should pull back from what he calls the "frenzy to treat" in the US. (lol, maybe he is in cahoots with the Mayo.) Who knows?
I tried to find good scientific articles showing that, at least in a percentage, the process of disease progress was slowed. It looks like this data is not strong. The slowing of the inflammatory process of relapses is not hard-linked to the steady progression of disability. This is something we all know. Some studies seem to indicate that if we slow the relapses we will slow the disability, but others indicate the two phenomena proceed independently of each other.
On the other hand it has not been disproved. All of this seems to be a return to the nihilistic (All Effort is Futile) attitude of the past. I think this is too bad and would result in a significant loss of our Quality of Life.
Your nurse's remark that the progression of diability is "silent" is a poor choice of words at best. She isn't living with the reality and "noise" of obviously deteriorating function. I was clearly disheartened to read this article by Poser. His words are carrying some weight and give those many of our "troublesome" neuros a leg to stand on. Still, we need to know what is being said out there and by whom.
Here is that article:
http://www.cmaj.ca/cgi/reprint/162/1/83.pdf
:((
Quix
She seems to be quoting a letter to the editor of NEJM - which was not a statement of fact, but a on opinion.
Many thanks for all your work on this, I may just print this out and show my MS Specialist Nurse.
In my last discussion with her I expressed my concern that with 20 years of history and no firm dx in spite of some quite dramatic sx, I may just slip into SPMS without any opportunity to try DMDs. Particularly as the neuro is taking a wait and see to how frequent my relapses are, whilst also considering the risk sharing scheme between the NHS and the drug companies in the UK.
Her reply to me was that the DMDs only have an impact on the frequency and severity of relapses and have no effect on slowing disease progresssion, which is a silent and continous process anyway. Hence, if you are destined to move from RRMS to SPMS at a particular stage in your disease progession then you will, with or without treatment.
I will add no more and allow you to curse under your breathe about some medics as I was when i read your post above. Great work doc.
Pat
In my last discussion with her I expressed my concern that with 20 years of history and no firm dx in spite of some quite dramatic sx, I may just slip into SPMS without any opportunity to try DMDs. Particularly as the neuro is taking a wait and see to how frequent my relapses are, whilst also considering the risk sharing scheme between the NHS and the drug companies in the UK.
Her reply to me was that the DMDs only have an impact on the frequency and severity of relapses and have no effect on slowing disease progresssion, which is a silent and continous process anyway. Hence, if you are destined to move from RRMS to SPMS at a particular stage in your disease progession then you will, with or without treatment.
I will add no more and allow you to curse under your breathe about some medics as I was when i read your post above. Great work doc.
Pat
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