Aa
Concerned about my progression...
I keep seeing these listed as being a predictor of disease progression:
• Male gender
• Onset after age 35
• Brainstem symptoms such as nystagmus, tremor, ataxia, and dysarthria
• Poor recovery following exacerbations
• Frequent attacks
• Primary progressive course
The only things I see that don't apply to me is 'male gender' and 'primary progressive course.' I was diagnosed with RRMS at age 36, I seem to recover poorly between exacerbations, and I get a lot of attacks - one every other month, it seems like. I have all the cerebellar symptoms, including tremor and nystagmus, which shows up when I'm having a pseudo-flare.
I know how pointless it is to try and predict this disease, but I want to be prepared for the future. Am I going to have to start thinking about long-term disability? Or do I wait until I'm in a wheelchair before I worry about it?
• Male gender
• Onset after age 35
• Brainstem symptoms such as nystagmus, tremor, ataxia, and dysarthria
• Poor recovery following exacerbations
• Frequent attacks
• Primary progressive course
The only things I see that don't apply to me is 'male gender' and 'primary progressive course.' I was diagnosed with RRMS at age 36, I seem to recover poorly between exacerbations, and I get a lot of attacks - one every other month, it seems like. I have all the cerebellar symptoms, including tremor and nystagmus, which shows up when I'm having a pseudo-flare.
I know how pointless it is to try and predict this disease, but I want to be prepared for the future. Am I going to have to start thinking about long-term disability? Or do I wait until I'm in a wheelchair before I worry about it?
Fortunately, I have insurance and long-term disability available to me - I opted for it years ago, before I knew I had MS, so now I have the same deal - 70% LTD until age 65. I also have a couple of 401k funds waiting for my retirement. I don't want to have to go on short-term disability - I'm fortunate that I do most of my job sitting down!
As you can tell, I've been obsessing about this recently! I try not to, but I've been having some issues recently with my legs.
And that's all we can do - hope for the best and expect the worst! It's been my slogan for a long time.
> I was hoping you were being sarcastic..
Wonko, I'm always sarcastic! It's a survival mechanism - it's either laugh or cry. But thank you for being so sweet. You'll have to try a lot harder before you upset me!
As you can tell, I've been obsessing about this recently! I try not to, but I've been having some issues recently with my legs.
And that's all we can do - hope for the best and expect the worst! It's been my slogan for a long time.
> I was hoping you were being sarcastic..
Wonko, I'm always sarcastic! It's a survival mechanism - it's either laugh or cry. But thank you for being so sweet. You'll have to try a lot harder before you upset me!
I agree with you that it is pointless it is to try to predict this disease. We could make ourselves nuts trying to guess what might happen. I do understand your desire to be prepared for the future. I don't think you ought to wait till you're in a wheelchair. Hopefully you never need to be, but I think that it's wise to have some idea of a plan in case things worsen significantly.
I'm not entirely clear on insurance plans in the U.S., but the sense I get is that it is better to have things in place before things worsen, otherwise insurance companies are less willing to provide coverage? I guess I'm thinking about cases where patients are denied coverage if the insurance company believes the disease was a 'pre-existing condition' at the time the patient became insured. Perhaps since you are already dx'ed, this is a moot point?
Being dx'ed with MS and off work for a year on short-term disability has forced me to consider the possibility that someday I may need to be on LTD. Having had the good fortune of good health (before dx), LTD was something I never ever would have imagined. Now, this possiblity puts my benefits much higher on my list of priorities. My employer benefits include guaranteed LTD income at 2/3 pay till age 65. I couldn't get a better benefits plan than the one I have now. So now, having MS, I am reluctant to change employers and/or relocate in what is currently a very lucrative job market in my area. I am happy with my job, and have been treated well by my boss through this ordeal. But I never intended to stay at this company or this town till retirement. We've always talked about moving to a more metropolitan area. Now we are thinking maybe this is where we must stay. It would be the best financial decision. That is not the only criteria to consider by far, but when you're sick, and your condition is a lifelong one, financial considerations are a biggie.
It just ***** that those of here must factor chronic illness into our life plans. But not to do so would be keeping our heads in the sand.
I also have looked at those 'predictors' and the statistics, trying to figure out where I fit, with the intent of trying to convince myself that the odds are in my favour. Some of the factors I've come across in the literature that may indicate a milder disease course are:
- female gender
- mainly sensory symtoms
- first attack monosymptomatic (Lhermitte's)
- absence of pyramidal signs at presentation
- duration of first remission more than I year
- low lesion load (2) on MRI at time of dx
- onset before age 40 (I was 38 at onset, so I like the articles that talk about <40, and try to ignore the ones that cite <35, lol)
- I also tried to filter out the fact that brainstem symptoms (for me, diplopia and nystagmus) early on are not good
I had myself convinced I would have a mild course, then I had another major relapse 6 months after dx. Again, I convinced myself that since it was sensory, I could still have a milder disease course overall.
Then my neuro started talking about my MS being "very active" [aka 'aggressive'] and suggesting I consider Novantrone. Six months after dx! So much for more or less fitting the 'mild disease course' criteria.
So what do we do, but plan for the worst and hope for the best. Sorry, it does sound a bit trite and generic, I know. This d*mn disease is just impossible to predict with any reasonable degree of certainty. There is just no way to know how each individual's disease will progress.
There is a passage from book I just re-read that seems fitting here. The writer, who has MS, talks about the need to come to terms with the worst-case scenario in order to adjust and move forward. It's long, so I'll start it in a new post.
Quix: I too have read that onset with ON was linked to a less aggressive disease course. Agree that more info collected on this would be helpful. I'll see what I can dig up in my material.
I'm not entirely clear on insurance plans in the U.S., but the sense I get is that it is better to have things in place before things worsen, otherwise insurance companies are less willing to provide coverage? I guess I'm thinking about cases where patients are denied coverage if the insurance company believes the disease was a 'pre-existing condition' at the time the patient became insured. Perhaps since you are already dx'ed, this is a moot point?
Being dx'ed with MS and off work for a year on short-term disability has forced me to consider the possibility that someday I may need to be on LTD. Having had the good fortune of good health (before dx), LTD was something I never ever would have imagined. Now, this possiblity puts my benefits much higher on my list of priorities. My employer benefits include guaranteed LTD income at 2/3 pay till age 65. I couldn't get a better benefits plan than the one I have now. So now, having MS, I am reluctant to change employers and/or relocate in what is currently a very lucrative job market in my area. I am happy with my job, and have been treated well by my boss through this ordeal. But I never intended to stay at this company or this town till retirement. We've always talked about moving to a more metropolitan area. Now we are thinking maybe this is where we must stay. It would be the best financial decision. That is not the only criteria to consider by far, but when you're sick, and your condition is a lifelong one, financial considerations are a biggie.
It just ***** that those of here must factor chronic illness into our life plans. But not to do so would be keeping our heads in the sand.
I also have looked at those 'predictors' and the statistics, trying to figure out where I fit, with the intent of trying to convince myself that the odds are in my favour. Some of the factors I've come across in the literature that may indicate a milder disease course are:
- female gender
- mainly sensory symtoms
- first attack monosymptomatic (Lhermitte's)
- absence of pyramidal signs at presentation
- duration of first remission more than I year
- low lesion load (2) on MRI at time of dx
- onset before age 40 (I was 38 at onset, so I like the articles that talk about <40, and try to ignore the ones that cite <35, lol)
- I also tried to filter out the fact that brainstem symptoms (for me, diplopia and nystagmus) early on are not good
I had myself convinced I would have a mild course, then I had another major relapse 6 months after dx. Again, I convinced myself that since it was sensory, I could still have a milder disease course overall.
Then my neuro started talking about my MS being "very active" [aka 'aggressive'] and suggesting I consider Novantrone. Six months after dx! So much for more or less fitting the 'mild disease course' criteria.
So what do we do, but plan for the worst and hope for the best. Sorry, it does sound a bit trite and generic, I know. This d*mn disease is just impossible to predict with any reasonable degree of certainty. There is just no way to know how each individual's disease will progress.
There is a passage from book I just re-read that seems fitting here. The writer, who has MS, talks about the need to come to terms with the worst-case scenario in order to adjust and move forward. It's long, so I'll start it in a new post.
Quix: I too have read that onset with ON was linked to a less aggressive disease course. Agree that more info collected on this would be helpful. I'll see what I can dig up in my material.
Phew! Thanks for taking the time to clear my name! I was hoping you were being sarcastic, but was worried I'd upset you, and/or looked like a bully to the rest of the forum.
I figured better safe than sorry since we can't always convey subtle nuances through posting.
I still don't know what is going on, but it's thankfully looking less and less like MS. But I can relate to a lot of what you say, especially since I've been most concerned about my career through all of this.
I'm glad to have all the insightful and understanding folks here to talk about it and try and keep me sane. As I told a friend today, I'm "problemed." (I was trying to think of the word "troubled," and that's what came out. I think I actually kinda like the term.)
I figured better safe than sorry since we can't always convey subtle nuances through posting.
I still don't know what is going on, but it's thankfully looking less and less like MS. But I can relate to a lot of what you say, especially since I've been most concerned about my career through all of this.
I'm glad to have all the insightful and understanding folks here to talk about it and try and keep me sane. As I told a friend today, I'm "problemed." (I was trying to think of the word "troubled," and that's what came out. I think I actually kinda like the term.)
Oh, Wonko - don't worry! I took your comment in the spirit that it was intended. And you're absolutely right about my neuro - I have been unhappy with him, and I'm just about to move to another neuro that is better about educating the patient. So no, you're not confused! You're right on target.
Quix, my neuro also tells me I have RRMS. He hasn't said I'm 'mild,' but then again, he hardly tells me anything. I feel like I'm progressively getting worse, but then again, I have good days and bad days - so I guess that means I'm in remission and relapse. Oh, well!
I think you are so right - we don't know a lot about MS. All we have are statistics. How many people are walking around with cognitive problems, and don't know it? We need better research for the 'quality of life' issues that go with MS. From walking problems to fatigue to cognitive abilities, all have really affected my life in the last two years.
I've always said that I hated having a cold, because it makes you just sick enough to be miserable at work, but not sick enough to stay home. So you go to work, sniffling, sneezing, with a big spray can of Lysol and a box of tissues, and try not to infect anybody else.
MS is like that, except it's not contagious. I'm tired all the time, foggy-headed, and I walk funny, but I'm not near sick enough to be on disability - just sick enough that working eight hours is a real chore!
Quix, my neuro also tells me I have RRMS. He hasn't said I'm 'mild,' but then again, he hardly tells me anything. I feel like I'm progressively getting worse, but then again, I have good days and bad days - so I guess that means I'm in remission and relapse. Oh, well!
I think you are so right - we don't know a lot about MS. All we have are statistics. How many people are walking around with cognitive problems, and don't know it? We need better research for the 'quality of life' issues that go with MS. From walking problems to fatigue to cognitive abilities, all have really affected my life in the last two years.
I've always said that I hated having a cold, because it makes you just sick enough to be miserable at work, but not sick enough to stay home. So you go to work, sniffling, sneezing, with a big spray can of Lysol and a box of tissues, and try not to infect anybody else.
MS is like that, except it's not contagious. I'm tired all the time, foggy-headed, and I walk funny, but I'm not near sick enough to be on disability - just sick enough that working eight hours is a real chore!
Sho-
" I read somewhere that if you sustain a given level of disability for six months, you're probably stuck with it. Anyone know if that's true?"
I don't know for a fact if that is true but it sure makes sense. I would think our body's ability at developing memory in muscle as well as the deterioration after 6 months or so would make reversing it much more difficult.
Just guessing,
Lu
" I read somewhere that if you sustain a given level of disability for six months, you're probably stuck with it. Anyone know if that's true?"
I don't know for a fact if that is true but it sure makes sense. I would think our body's ability at developing memory in muscle as well as the deterioration after 6 months or so would make reversing it much more difficult.
Just guessing,
Lu
Quix, I just wanted to say about your comment that your neuro thinks you're doing so well, that it often seems to me that neuros have a different definition of "well" than the rest of the world. At least, I keep getting the impression that neuros seem to think I'm trying to make mountains out of molehills.
When I went to the local neuro my PCP likes, he concluded that I just have "a few balance problems." I do have balance problems, but I hardly think that sums it up.
My regular neuro once pointed out all the people in the waiting room who are in wheelchairs as proof that I'm doing "well." He does usually manage to make me feel better about the whole thing despite the bizarre illogicality of some of his arguments, but then I go home and think, wait a minute, did that even make sense?
I don't know what these neuros think--suffering is some kind of zero sum game and because those people have more we have less?
sho
PS I read somewhere that if you sustain a given level of disability for six months, you're probably stuck with it. Anyone know if that's true?
When I went to the local neuro my PCP likes, he concluded that I just have "a few balance problems." I do have balance problems, but I hardly think that sums it up.
My regular neuro once pointed out all the people in the waiting room who are in wheelchairs as proof that I'm doing "well." He does usually manage to make me feel better about the whole thing despite the bizarre illogicality of some of his arguments, but then I go home and think, wait a minute, did that even make sense?
I don't know what these neuros think--suffering is some kind of zero sum game and because those people have more we have less?
sho
PS I read somewhere that if you sustain a given level of disability for six months, you're probably stuck with it. Anyone know if that's true?
These predictors and statistics can give us a false sense of doom or hope, depending on which way you read them - like Heather wrote, we need to live each day to its fullest.
Let me backtrack and tell you I was really obsessed with the stats after my heart attack in January - it's hard to ignore that 2 out of every 3 women with heart attacks die. Why did I make it? I haven't a clue.
And then bam! in my face is the next predictive stat - almost 70% of all women who have had a heart attack will have another one within one year of the first. That one was even harder to process than the first one because I'm supposed to anticipate that the odds are good I'm going to have another one? I will grant you that as January's anniversary draws closer I will have my eyes on turning that calendar page and proclaiming that I beat the odds again.
Honestly it took a good six months to get rid of looking for things that would predict my health and accept that for now I am here, and I can choose to make as much as I can of today.
So now I have all these things in my head about MS and where I'm going to end up with this disease, based on my age and symptoms and lesions and all the other things. Yes, I have thought about it, but then I put those thoughts aside because I have too many other things to look forward to rather than anticipate this disease's course in my body.
I hope this rambling post makes some sense - we can't predict what's going to happen so don't make ourselves crazy anticipating what might be.
My best to all of you,
Lulu
Let me backtrack and tell you I was really obsessed with the stats after my heart attack in January - it's hard to ignore that 2 out of every 3 women with heart attacks die. Why did I make it? I haven't a clue.
And then bam! in my face is the next predictive stat - almost 70% of all women who have had a heart attack will have another one within one year of the first. That one was even harder to process than the first one because I'm supposed to anticipate that the odds are good I'm going to have another one? I will grant you that as January's anniversary draws closer I will have my eyes on turning that calendar page and proclaiming that I beat the odds again.
Honestly it took a good six months to get rid of looking for things that would predict my health and accept that for now I am here, and I can choose to make as much as I can of today.
So now I have all these things in my head about MS and where I'm going to end up with this disease, based on my age and symptoms and lesions and all the other things. Yes, I have thought about it, but then I put those thoughts aside because I have too many other things to look forward to rather than anticipate this disease's course in my body.
I hope this rambling post makes some sense - we can't predict what's going to happen so don't make ourselves crazy anticipating what might be.
My best to all of you,
Lulu
This is where I got some of my information. You may want to give it a looksy. It contains alot of info that I found useful about predictors of disability.
telusplanet.net/public/dgarneau/health4c.htm
of course, it is www
Heather
telusplanet.net/public/dgarneau/health4c.htm
of course, it is www
Heather
I share your worries. And I have to agree with just about everything that's been said. However, I have read just the opposite about the predicitive value of ON, even severe ON. I have repeatedly read that it predicts a better course. We really need to collect some of this info on ON and get it put together.
Lately I've been reading about the anniversary thing, that the disability accumulated by the 10th is a better indicator of what's to come. That goes along with the vast amount that is being shown to disprove the whole Benign MS diagnosis. This diagnosis cannot be made until well into the disease process - upwards of 15 years and even then, a percentage still has disease that can still "turn" nasty.
The predictor that I have read that holds up very well is the appearance of the disease with motor or brainstem lesions. Those who have mainly sensory disturbances have less disability in general.
BUT, we also have to acknowledge that for the last 2 or 3 decades the term "disability" has primarliy been used to mean difficulty in ambulation or accomplishing the activities of daily living. With regard to the discussion of "Benign MS" we know that at least a third of those with a "benign" course will still have significant cognitive decline. More an more attention is being focused on the cognitive aspect of MS. I have yet to see the studies that say, "If you start out with predominantly sensory symptoms, you are more likely to have a milder course AND be less likely to suffer from cognitive disability."
Testing for cognitive problems has always been viewed as cumbersome and expensive and the research has neglected it. I see that we will be hearing more and more about this. I predict, from what I have seen about the prevalence of gray matter diseases and the studies on so-called benign disease, that we will learn that MS is much more uniform in the damage it causes to our higher brain functions.
I worry about my progression, too, Jen. From the morning in November, 2004 that I discover I couldn't lift my right leg until now, I have had a steady loss of strength. My urinary troubles have very slowly, but progressively worsened and the same for the strength in my right arm. I have had relapses and remissions of some sensory things and some relapses of weakness that improved back to the worsening baseline. My MS neuro, whom I do trust, states firmly that I have mild disease. He says my exam is stable and my MRI all but unremarkable. He states I have RRMS, because he has never seen a PPMS with a brain MRI as good as mine. What am I to think? I feel like I have inched downhill STEADILY for the last four years after the appearance of my first symptom.
So, I feel I have:
Advanced Age
Almost all motor or brainstem symptoms from the beginning
No return to baseline for major symptoms
Poor Relapse/Remit pattern
Little evidence of inflammatory activity (few, small lesions, no enhancement, few O-Bands)
But, my worrying can't change much of it. My doc thinks I'm having a great response to Avonex and is about to put me on every 2 year MRIs. So I often think that I magnify my problems in my head.
But, just wanted you to know that I share your concerns about you and me.
Comfort in company, Quix
Lately I've been reading about the anniversary thing, that the disability accumulated by the 10th is a better indicator of what's to come. That goes along with the vast amount that is being shown to disprove the whole Benign MS diagnosis. This diagnosis cannot be made until well into the disease process - upwards of 15 years and even then, a percentage still has disease that can still "turn" nasty.
The predictor that I have read that holds up very well is the appearance of the disease with motor or brainstem lesions. Those who have mainly sensory disturbances have less disability in general.
BUT, we also have to acknowledge that for the last 2 or 3 decades the term "disability" has primarliy been used to mean difficulty in ambulation or accomplishing the activities of daily living. With regard to the discussion of "Benign MS" we know that at least a third of those with a "benign" course will still have significant cognitive decline. More an more attention is being focused on the cognitive aspect of MS. I have yet to see the studies that say, "If you start out with predominantly sensory symptoms, you are more likely to have a milder course AND be less likely to suffer from cognitive disability."
Testing for cognitive problems has always been viewed as cumbersome and expensive and the research has neglected it. I see that we will be hearing more and more about this. I predict, from what I have seen about the prevalence of gray matter diseases and the studies on so-called benign disease, that we will learn that MS is much more uniform in the damage it causes to our higher brain functions.
I worry about my progression, too, Jen. From the morning in November, 2004 that I discover I couldn't lift my right leg until now, I have had a steady loss of strength. My urinary troubles have very slowly, but progressively worsened and the same for the strength in my right arm. I have had relapses and remissions of some sensory things and some relapses of weakness that improved back to the worsening baseline. My MS neuro, whom I do trust, states firmly that I have mild disease. He says my exam is stable and my MRI all but unremarkable. He states I have RRMS, because he has never seen a PPMS with a brain MRI as good as mine. What am I to think? I feel like I have inched downhill STEADILY for the last four years after the appearance of my first symptom.
So, I feel I have:
Advanced Age
Almost all motor or brainstem symptoms from the beginning
No return to baseline for major symptoms
Poor Relapse/Remit pattern
Little evidence of inflammatory activity (few, small lesions, no enhancement, few O-Bands)
But, my worrying can't change much of it. My doc thinks I'm having a great response to Avonex and is about to put me on every 2 year MRIs. So I often think that I magnify my problems in my head.
But, just wanted you to know that I share your concerns about you and me.
Comfort in company, Quix
I have read that spinal lesions are an indicator of a worse course in MS. I have also read that if you have alot of sensory symptoms with your MS, rather than problems with walking, etc., that predicts a slower rate of disability and much milder course.
If you start your course of MS with severe Optic Neuritis problems, that is an indicator of a worse course with MS. Believe it or not, the more you can indentify relapsing and remitting symptoms, the better your future course of MS or the later the progession.
The later in life that you are diagnosed with MS, the future may show prgression quicker, than if you are diagnosed early in your 20's to 30's for instance. It's also been shown that if you remain fairly stable in your course when taking any of the DMD's, the better. It puts the diasability off, since you are responding to the DMD's, by having less relapses or severe relapses.
What I really have to say, after being diagnosed myself for over a decade, is that I do not believe that doctor's know enough about MS and even waht causes it, to be able to predict what our future will bring. I do know that if you are still walking unassisted after 10 years, that is an excellent sign for a milder future with the disease.
As with any disease, the future is unknown. Life itself is an unknown. We never know if we will be stricken with something that will disable us. So live every second of your life and enjoy the days you have NOW. None of us knows what the future will bring. Whatever happens, we will handle it together...
Best Wishes everyone,
Heather
If you start your course of MS with severe Optic Neuritis problems, that is an indicator of a worse course with MS. Believe it or not, the more you can indentify relapsing and remitting symptoms, the better your future course of MS or the later the progession.
The later in life that you are diagnosed with MS, the future may show prgression quicker, than if you are diagnosed early in your 20's to 30's for instance. It's also been shown that if you remain fairly stable in your course when taking any of the DMD's, the better. It puts the diasability off, since you are responding to the DMD's, by having less relapses or severe relapses.
What I really have to say, after being diagnosed myself for over a decade, is that I do not believe that doctor's know enough about MS and even waht causes it, to be able to predict what our future will bring. I do know that if you are still walking unassisted after 10 years, that is an excellent sign for a milder future with the disease.
As with any disease, the future is unknown. Life itself is an unknown. We never know if we will be stricken with something that will disable us. So live every second of your life and enjoy the days you have NOW. None of us knows what the future will bring. Whatever happens, we will handle it together...
Best Wishes everyone,
Heather
Sheesh, I am sorry for sounding so awful. I really was trying to convey that you always come across as informed and you seem to have done a lot of research and really do seem to have encyclopedic knowledge about MS! I didn't mean to sound condescending--I have ZERO medical training, so I'm in no position at all!
Please understand it was poor wording (which maybe I can blame on the constant fod in my head) and that I never meant anything other than to compliment how rational and smart you seem to be!
I'm glad to read that you are on the lookout for signs of other autoimmune diseases, I've also read that they seem to travel in pacts. And that t-spin MRI sounds like a good idea. Hopefully it's clear, but even if so it could be useful to have as a baseline.
Good luck, glad you are getting along with your neuro, I must've had you confused! Can I blame that on poor concentration, too?
Please understand it was poor wording (which maybe I can blame on the constant fod in my head) and that I never meant anything other than to compliment how rational and smart you seem to be!
I'm glad to read that you are on the lookout for signs of other autoimmune diseases, I've also read that they seem to travel in pacts. And that t-spin MRI sounds like a good idea. Hopefully it's clear, but even if so it could be useful to have as a baseline.
Good luck, glad you are getting along with your neuro, I must've had you confused! Can I blame that on poor concentration, too?
Thanks, Wonko! Good to know that I sound capable, at least!
As far as I can tell, all the problems I've been having are neurological. I've been keeping an eye out for other auto-immune diseases, because I know that once you have one, it seems to open the dooor for the rest.
I was diagnosed in 2007, but like Shosin, I've had symptoms for many years, starting when I was twelve years old. So when do we start counting?
Practically speaking, everything's based on statistics anyway, so go with the date you were diagnosed, I say... so in 2012 I'll know a little more about my future. I've been having problems with mobility this week, which I guess is why I'm worried.
My neuro is on top of it - he's ordered a t-spine MRI to check for lesions in that area.
As far as I can tell, all the problems I've been having are neurological. I've been keeping an eye out for other auto-immune diseases, because I know that once you have one, it seems to open the dooor for the rest.
I was diagnosed in 2007, but like Shosin, I've had symptoms for many years, starting when I was twelve years old. So when do we start counting?
Practically speaking, everything's based on statistics anyway, so go with the date you were diagnosed, I say... so in 2012 I'll know a little more about my future. I've been having problems with mobility this week, which I guess is why I'm worried.
My neuro is on top of it - he's ordered a t-spine MRI to check for lesions in that area.
I don't have any answers. There just seem to be so many unknowns and statistics are no help when you're the exception. Just wanted to say that I worry about the same things even tho I have less of those indicators than you do as I seem to get slowly, but steadily, worse and not better.
Wonko: I think your question about anniversaries is a good one. The first time I saw my neuro, he seemed to think the fact that I had had symptoms for so long without many obvious outward problems was a good sign. Since then (well really over the past six months), I have experienced what seems to me to be a significant decrease in functionality so I don't think that predictor worked too well.
How can you really know when the first thing was? It all seems to depend on where the lesions are and maybe on how much attention you're paying when you first notice something. A year or two before I had something that in retrospect probably was MS, I had a period where my fingertips seems sort of numb/less sensitive. It was a subtle thing, although it bothered me at the time, and I put it down to the cold weather. Was that the MS, my imagination, or something else entirely? How would I ever know?
As for date of dx, that seems to be so random based on what neuro you see that I don't see how anyone could derive anything reliable from that.
sho
Wonko: I think your question about anniversaries is a good one. The first time I saw my neuro, he seemed to think the fact that I had had symptoms for so long without many obvious outward problems was a good sign. Since then (well really over the past six months), I have experienced what seems to me to be a significant decrease in functionality so I don't think that predictor worked too well.
How can you really know when the first thing was? It all seems to depend on where the lesions are and maybe on how much attention you're paying when you first notice something. A year or two before I had something that in retrospect probably was MS, I had a period where my fingertips seems sort of numb/less sensitive. It was a subtle thing, although it bothered me at the time, and I put it down to the cold weather. Was that the MS, my imagination, or something else entirely? How would I ever know?
As for date of dx, that seems to be so random based on what neuro you see that I don't see how anyone could derive anything reliable from that.
sho
I'm sorry to hear that this needs to be a concern for you.
My advice, which of course is not worth much, is to be careful that a possible variety of conditions are not all being hidden by MS. I *think* it was you who wrote before that your neuro doesn't always seem to listen or show interest in all of your symptoms, excuse me if I'm mistaken. And I am pretty sure you've shared concerns about seizures, too.
You seem very capable and informed. I think you should stay on top of the possibility that perhaps more than MS contributes to your symptom load. Your doctors may miss signs of another condition given that so much could (and in fact, may all be) from MS.
I've had a gaggle of unexplained neuro symptoms for about a year, but more recently have had issues not consistent with a neurological disorder, which is perhaps why my line of thinking is in this direction.
I'm sure as well you've heard that the 5 and 10 year anniversaries are supposed to hold some predictive power, like if you are still mobile after that time, you may be in for a more mild course. However, I've never read how to resolve the issue of when to set the reference: diagnosis, 1st attack, or some other indicator?
Good luck, and I'm sure you'll get better advice from the Pros.
My advice, which of course is not worth much, is to be careful that a possible variety of conditions are not all being hidden by MS. I *think* it was you who wrote before that your neuro doesn't always seem to listen or show interest in all of your symptoms, excuse me if I'm mistaken. And I am pretty sure you've shared concerns about seizures, too.
You seem very capable and informed. I think you should stay on top of the possibility that perhaps more than MS contributes to your symptom load. Your doctors may miss signs of another condition given that so much could (and in fact, may all be) from MS.
I've had a gaggle of unexplained neuro symptoms for about a year, but more recently have had issues not consistent with a neurological disorder, which is perhaps why my line of thinking is in this direction.
I'm sure as well you've heard that the 5 and 10 year anniversaries are supposed to hold some predictive power, like if you are still mobile after that time, you may be in for a more mild course. However, I've never read how to resolve the issue of when to set the reference: diagnosis, 1st attack, or some other indicator?
Good luck, and I'm sure you'll get better advice from the Pros.
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