Aa
Symptom progression?
I was wondering how many of you continue to have symptoms every day?
When I went to a Teva lunch conference a few wks ago I sat with 3 other people with MS. We were going back and forth talking about when we were DXd, etc, and then I was asking them about their symptoms and I told them about mine. Two of the women have been DXd for about 10+ yrs and the guy for about 7 yrs.
They looked somewhat shocked when I told them all of my symptoms (problems walking, weakness climbing stairs, spasticity, spasms, tremors in my fingers & on my thigh, ON at least twice, etc, etc), and they all told me that they rarely have symptoms, and if they do, they’re really not bad. Is this typical for RRMS – especially for someone just DXd for about 6 months?
Thanks!
Kelly
When I went to a Teva lunch conference a few wks ago I sat with 3 other people with MS. We were going back and forth talking about when we were DXd, etc, and then I was asking them about their symptoms and I told them about mine. Two of the women have been DXd for about 10+ yrs and the guy for about 7 yrs.
They looked somewhat shocked when I told them all of my symptoms (problems walking, weakness climbing stairs, spasticity, spasms, tremors in my fingers & on my thigh, ON at least twice, etc, etc), and they all told me that they rarely have symptoms, and if they do, they’re really not bad. Is this typical for RRMS – especially for someone just DXd for about 6 months?
Thanks!
Kelly
Mary, I can totally see what you're saying. And your response actually kind of made me laugh. So, thanks for entertaining me. It's Mon morning, so that's a great way to start out the week.
-Kelly :-)
-Kelly :-)
Just thought I would add that when I discussed this with my neuro recently, he told me that my waxing and waning of ongoing symptoms outside of true exacerbations is not atypical and not in itself necessarily an indication of disease progression.
Sometimes it is hard to please the MSer in me.
I know a cane helps my balance but I don't want to be the only one in a group using one.
It seems weird when people don't notice how much concentration it takes to walk but
I'm glad I can still pull that off.
I feel both fortunate and guilty that I'm doing better after 20 years than some people do after two.
I was relieved when attending a MS group recently that all four of us were walking unassisted.
I was disappointed I was so limited in my ability to participate in a yoga group the week before.
Sometimes people ask about my symptoms and I'm so used to living with these limitations that I can't come up with very much right away.
Sometimes I am so aware of those same limitations that I don't think I can make it through another day with them.
Sometimes I don't believe the MS diagnosis is true.
Sometimes the diagnosis is so fresh and real that it colors my perceptions of everything else.
Mostly, I know all of us with MS will progress differently. As with most things in my life, I don't want to be first, last, best, worst, fasest, slowest, etc. I'm such a middle-of-the-roader!
Sorry to ramble my response Kelly. My short answer is YES, intensity varies but I have symptoms every day. I don't meet a bunch of people with those big symptom free remissions. They must hang out someplace else (Colorado?). It's probably a good thing. I'm ok but I don't think I'd handle it well either.
Maybe they were shocked because geeze YOU LOOK SO GOOD? LOL
Mary
I know a cane helps my balance but I don't want to be the only one in a group using one.
It seems weird when people don't notice how much concentration it takes to walk but
I'm glad I can still pull that off.
I feel both fortunate and guilty that I'm doing better after 20 years than some people do after two.
I was relieved when attending a MS group recently that all four of us were walking unassisted.
I was disappointed I was so limited in my ability to participate in a yoga group the week before.
Sometimes people ask about my symptoms and I'm so used to living with these limitations that I can't come up with very much right away.
Sometimes I am so aware of those same limitations that I don't think I can make it through another day with them.
Sometimes I don't believe the MS diagnosis is true.
Sometimes the diagnosis is so fresh and real that it colors my perceptions of everything else.
Mostly, I know all of us with MS will progress differently. As with most things in my life, I don't want to be first, last, best, worst, fasest, slowest, etc. I'm such a middle-of-the-roader!
Sorry to ramble my response Kelly. My short answer is YES, intensity varies but I have symptoms every day. I don't meet a bunch of people with those big symptom free remissions. They must hang out someplace else (Colorado?). It's probably a good thing. I'm ok but I don't think I'd handle it well either.
Maybe they were shocked because geeze YOU LOOK SO GOOD? LOL
Mary
Great points you all are making. And I guess it's kind of good to know that others are out there who have RRMS where their symptoms never go away (even though I wish none of us had this disease). I was beginning to worry that maybe mine was starting to progress more than I would like. I guess, in a sense like Lulu said, we're always progressing with this MS.
Thanks,
Kelly
Thanks,
Kelly
I agree with all. I too, have been to the Teva dinners, and end up sitting with people who are basically symptom free for many many years. It always makes me wonder about myself and the feeling I am spiraling down instead of staying the same.
Then as I look around the room, I notice others. Many others, who are worse off than myself. I think we are all so different, and are affected in so many different ways. Either physical or cognitive or all the other ways this disease can show up,
JJ, I too was DX 4/09 and I I think it is great advice to compare your "own" normal to your "own" normal. Good advice.
Michelle
Then as I look around the room, I notice others. Many others, who are worse off than myself. I think we are all so different, and are affected in so many different ways. Either physical or cognitive or all the other ways this disease can show up,
JJ, I too was DX 4/09 and I I think it is great advice to compare your "own" normal to your "own" normal. Good advice.
Michelle
I really agree with what you say. Since I was dxd i have had no symptom free day and some days are just better than others. I know when I am having a good day and I certianly know when I have overdone it and am exhausted but tingling etc is ongoing.
Love Sarah x
Love Sarah x
Bravo, JJ. Well constructed thoughts on this topic.
The point that we want to overlook or conveniently forget until it slaps us in the face for attention is we are constantly have a new normal- we have problems/symptoms arise and then they may go away, but it leaves our bodies in a new normal condition. We always hope to return to where we were, but it almost always does not happen that way.
Even when we think our disease is under control, we know that MS never takes a break and it continues to progress even if we aren't conciously aware of the changes. It can be like those viruses our computers sometimes get - it erodes everything in the background until one day it stops the system from working. If only we could wipe our hard drive clean and reformat! LOL
I hope this rambling makes some sense....... It's early and I'm still on my first cup of tea.
Lulu
The point that we want to overlook or conveniently forget until it slaps us in the face for attention is we are constantly have a new normal- we have problems/symptoms arise and then they may go away, but it leaves our bodies in a new normal condition. We always hope to return to where we were, but it almost always does not happen that way.
Even when we think our disease is under control, we know that MS never takes a break and it continues to progress even if we aren't conciously aware of the changes. It can be like those viruses our computers sometimes get - it erodes everything in the background until one day it stops the system from working. If only we could wipe our hard drive clean and reformat! LOL
I hope this rambling makes some sense....... It's early and I'm still on my first cup of tea.
Lulu
I have had symptoms every day since my dx more than 3 years ago, actually since 2 months before my dx. 4 attacks from Sept 2007 - Dec 2008, and have residual symptoms from 3 of the 4 of these attacks. Fatigue, vertigo, double vision and loss of balance come and go. Moderate to severe paresthesias mainly in my left hand, each and every single day.
COMMUNITY LEADER
I'm just coming up to the 2nd anniversary of when my world turned upside down, since then I dont think there really has been a day without being aware that what I'm dealing with is still here. When the fatigue isn't happening I'm definitely both mentally and physically more able but since April 09 i haven't been symptom free.
I look at it as, there are sx and then there are sx, in the early days the sx would visit then disapeared and it wasn't until 03 that I started to have sx that disabled me, 03 is when I first started loosing my legs. So from 03 to 09 I would periodically have intense blocks of time (weeks), the fatigue is what got my attention and everything that stopped working properly in that time, I explained away by blaming it all on fatigue.
Each time it happened, it was worse than the time before but I dont think I've ever wondered how bad will it be the next time, and as illogical as it seems to me now, based on its repeditive nature, I still never expected to experience it again. It really wasn't until 09 when i started walking like a string puppet, my sight changed for good, I couldn't name anything and was stuttering and sluring my words did I think, oh oh!
Every sx that happened before was nothing in my mind in comparrison to what happened during that 09 episode, I dont think i would of ever been able to predict what would happen to me next. seriously who would ever imagine let alone predict that they'd walk like a string puppet lol! I dont think its ever good to compare your self with anyone else on any subject, there will always be someone better off or worse off than your self, so where does it ever get you, NO WHERE!
You are you and they are not, (apples are not the same as all apples) if someone runs marathons with MS they probably could run marathons before MS but still its not the same as it was, i couldn't run a marathon before and I certainly can't run one now. lol I wakeboard when I can, it sounds better than it is, to wakeboard takes a lot of preperation and planning, and there is payback which can take days or weeks to recover but I wakeboard!
Look at your normal and no one elses, reasses your baseline when you need to but keep looking forward because things that can seem perminant today, can get better.
Cheers.............JJ
I look at it as, there are sx and then there are sx, in the early days the sx would visit then disapeared and it wasn't until 03 that I started to have sx that disabled me, 03 is when I first started loosing my legs. So from 03 to 09 I would periodically have intense blocks of time (weeks), the fatigue is what got my attention and everything that stopped working properly in that time, I explained away by blaming it all on fatigue.
Each time it happened, it was worse than the time before but I dont think I've ever wondered how bad will it be the next time, and as illogical as it seems to me now, based on its repeditive nature, I still never expected to experience it again. It really wasn't until 09 when i started walking like a string puppet, my sight changed for good, I couldn't name anything and was stuttering and sluring my words did I think, oh oh!
Every sx that happened before was nothing in my mind in comparrison to what happened during that 09 episode, I dont think i would of ever been able to predict what would happen to me next. seriously who would ever imagine let alone predict that they'd walk like a string puppet lol! I dont think its ever good to compare your self with anyone else on any subject, there will always be someone better off or worse off than your self, so where does it ever get you, NO WHERE!
You are you and they are not, (apples are not the same as all apples) if someone runs marathons with MS they probably could run marathons before MS but still its not the same as it was, i couldn't run a marathon before and I certainly can't run one now. lol I wakeboard when I can, it sounds better than it is, to wakeboard takes a lot of preperation and planning, and there is payback which can take days or weeks to recover but I wakeboard!
Look at your normal and no one elses, reasses your baseline when you need to but keep looking forward because things that can seem perminant today, can get better.
Cheers.............JJ
I think, like Ess, I begin to worry that I may be in a progressive state, even though I'm just in the beginning stages of MS. And Julie, you're exactly right about the power of the mind. I try to keep a leash on my mind, but sometimes it does wonder about a bit.
Yep, it is definitely an ongoing journey. Thanks everyone.
-Kelly
Yep, it is definitely an ongoing journey. Thanks everyone.
-Kelly
Well, that is the point I guess, there is no typical progression. I do think it's important though to expect that you will progress slowly. The power of the mind cannot be underestimated.
I totally understand the need to compare, I do it but often I find that either I end up feeling guilty that I am doing so well, or feel gypped because I am not one of the ones who has found out that I don't have some other cause (like one that can be cured) of these sx.
I guess I still haven't completely accepted the fact that I have MS. It's an ongoing journey.
Julie
I totally understand the need to compare, I do it but often I find that either I end up feeling guilty that I am doing so well, or feel gypped because I am not one of the ones who has found out that I don't have some other cause (like one that can be cured) of these sx.
I guess I still haven't completely accepted the fact that I have MS. It's an ongoing journey.
Julie
Kelly, you're right, there's just no predicting.
I had 2 or 3 intevals of about a year each where I had no symptoms. This was well before I thought seriously about MS, so after each attack I'd say to myself, 'Well, I don't know what that was but I'm glad it's gone. The end.'
All without a neuro telling me anything helpful, of course. But for the last 3 years, at least, I've never been without symptoms of some sort. At first I worried that that meant I was in a progressive stage. Now I know that it's not necessarily so. It's a question of level and relativity.
In the final analysis, though, it doesn't really matter. All of us will have to deal with whatever comes, and fortunately having this forum makes it easier to cope.
ess
I had 2 or 3 intevals of about a year each where I had no symptoms. This was well before I thought seriously about MS, so after each attack I'd say to myself, 'Well, I don't know what that was but I'm glad it's gone. The end.'
All without a neuro telling me anything helpful, of course. But for the last 3 years, at least, I've never been without symptoms of some sort. At first I worried that that meant I was in a progressive stage. Now I know that it's not necessarily so. It's a question of level and relativity.
In the final analysis, though, it doesn't really matter. All of us will have to deal with whatever comes, and fortunately having this forum makes it easier to cope.
ess
I don't know, I think it's only natural to compare or wonder where other people are at within this disease. When I do compare, I think that I come to the conclusion that there's really no way to gauge what I can expect next with MS. I see people all over the board with their symptoms. There's really nothing to go by. What's typical progression, I don't know. ???
There is always going to be someone better off than you and someone worst than you. Not good to compare unless you use them for inspiration.
Julie
Julie
Yeah, I don't think I've ever had a day since it started in the beginning of Jan '09 that I haven't had symptoms. And for me, it feels like my symptoms are always either getting worse, or I have new symptoms popping up all the time. I guess it keeps my daily symptom journal active.
And the nurse practitioner who came to our house to show me how to inject the Copaxone had just come from working out at the gym for 3 hrs, including doing aerobics. At the time I wasn't aware that PwMS had cognitive difficulties, too. She told me she was on disability. I was thinking to myself that she may want to keep that quiet or she's going to get caught.... :-)
And the nurse practitioner who came to our house to show me how to inject the Copaxone had just come from working out at the gym for 3 hrs, including doing aerobics. At the time I wasn't aware that PwMS had cognitive difficulties, too. She told me she was on disability. I was thinking to myself that she may want to keep that quiet or she's going to get caught.... :-)
Man.... ten miles a day. I used to run, but when my right leg went wonky, I had to stop - I was afraid of tripping and falling.
Since my diagnosis in 2007, I've had symptoms every day. Heck, I was having problems in 2006, but didn't know what was wrong with me. Sometimes I feel better and less symptomatic, but I've never felt symptom-free.
Since my diagnosis in 2007, I've had symptoms every day. Heck, I was having problems in 2006, but didn't know what was wrong with me. Sometimes I feel better and less symptomatic, but I've never felt symptom-free.
Kell,
I thought the same thing when sitting at those meetings. Seems like lots of people do indeed experience the remittance. What the heck are WE doing wrong, lol
I sure don't know why, but guess it's the old "not all lesions are created equal thought." What wreaks havoc on some doesn't on all :(
It is common for RRMSers, but it's also common to be RR and always be symptomatic and/or have those limitations and issues. Cheers to him running the 10 a day - definitely inspiring.
I thought the same thing when sitting at those meetings. Seems like lots of people do indeed experience the remittance. What the heck are WE doing wrong, lol
I sure don't know why, but guess it's the old "not all lesions are created equal thought." What wreaks havoc on some doesn't on all :(
It is common for RRMSers, but it's also common to be RR and always be symptomatic and/or have those limitations and issues. Cheers to him running the 10 a day - definitely inspiring.
Funny that you bring up running marathons. The guy I was sitting with told me that he runs about 10 miles a day. I was like, "What?!" I'm very happy that he is still able to do all the same things he used to do before having MS. I have that same hope for everyone.
From what I understand from my neuro, the DMD's are not totally effective until we are on them a full year. Even then if the MS is totally out of control by the time a dx is made, it can take longer. She fully suspects (if it isn't PPMS) that two years may be what is needed.
For me, I just don't compare myself to how other MSers are doing. It just upsets me. I am sure not running marathons. I am lucky to lift my leg onto a scooter. I am hopeful that with time things will settle. Until then, it is what it is.....
For me, I just don't compare myself to how other MSers are doing. It just upsets me. I am sure not running marathons. I am lucky to lift my leg onto a scooter. I am hopeful that with time things will settle. Until then, it is what it is.....
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
