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Remission?
I have seen many posts asking what constitutes a relapse but I don't remember if anyone has talked about what is an official remission. I have a DX of PPMS as I never get better but for almost 3 days I have been doing a lot better than normal. Almost no pain, vision doing a lot better, numb feeling in feet less. fatigue not as bad. the only down side is that my hand tremors have been a little bit worse as I get tired.
So how long to you have to be feeling better for it to be a remission?
Do I really have RRMS but my flares last for decades?
Dennis
So how long to you have to be feeling better for it to be a remission?
Do I really have RRMS but my flares last for decades?
Dennis
Actually the VA Neuros initially classed me as possible SPMS before they sent me to Vanderbilt. Once my MS Neuro at Vanderbilt said it was PPMS they bowed to his decision as they freely admitted they didn't really know anything about MS.
SO after reading your post I went to the NMSS site to read up on the different types. And now I don't know what to think. LOL
SPMS: is primarily considered a progressive disease course because it marks the transition from the inflammatory process that occurs in relapsing-remitting MS to a process characterized by gradual destruction and loss of nerve fibers. Of the 85 % of people initially diagnosed with RRMS, approximately half will transition to SPMS within 10 years, and 90% will transition within 25 years. Once this transition occurs, a person will gradually experience fewer relapses (also called attacks or exacerbations), and possibly none at all. In those people who continue to experience relapses, this disease course is considered relapsing as well as progressive.
PRMS is generally considered a progressive disease course because it is progressive from onset. However, it is also included in the list of relapsing forms because people with PRMS experience occasional relapses as well.
PPMS is a disease course that is characterized by steady worsening of neurologic functioning, without any distinct relapses (also called attacks or exacerbations) or periods of remission. A person’s rate of progression may vary over time — with occasional plateaus or temporary improvements — but the progression is continuous.
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So I don't quite fit the PPMS as I do have relapses at times. And the IV Steroids I had recently did improve things for a while (for ~ 2 months).
The PRMS seems to fit a little better as I do have relapses. But it doesn't mention any periods of improvement.
The SPMS also seems to fit due to the relapses I have, but again it does not mention any periods of improvement. Plus it is suppose to be the follow on from RRMS.
Of course we all know the parameters for RRMS. I haven't quite fit those parameters either. It took a good 5 years before my first leveling off of symptoms. But I also wasn't getting any treatment for symptoms and continued to push myself during that period. SO that may be why I didn't get better. Once I stopped pushing myself and started to get some treatment for some of symptoms I was stable for another 5 years.
The next 10 years was another steady decline as I was constantly under a lot of stress trying to find out was wrong with me, moving, not getting treatment, etc. So again there could be a case for why I wasn't having any remissions other than disease type.
Dennis
SO after reading your post I went to the NMSS site to read up on the different types. And now I don't know what to think. LOL
SPMS: is primarily considered a progressive disease course because it marks the transition from the inflammatory process that occurs in relapsing-remitting MS to a process characterized by gradual destruction and loss of nerve fibers. Of the 85 % of people initially diagnosed with RRMS, approximately half will transition to SPMS within 10 years, and 90% will transition within 25 years. Once this transition occurs, a person will gradually experience fewer relapses (also called attacks or exacerbations), and possibly none at all. In those people who continue to experience relapses, this disease course is considered relapsing as well as progressive.
PRMS is generally considered a progressive disease course because it is progressive from onset. However, it is also included in the list of relapsing forms because people with PRMS experience occasional relapses as well.
PPMS is a disease course that is characterized by steady worsening of neurologic functioning, without any distinct relapses (also called attacks or exacerbations) or periods of remission. A person’s rate of progression may vary over time — with occasional plateaus or temporary improvements — but the progression is continuous.
========================
So I don't quite fit the PPMS as I do have relapses at times. And the IV Steroids I had recently did improve things for a while (for ~ 2 months).
The PRMS seems to fit a little better as I do have relapses. But it doesn't mention any periods of improvement.
The SPMS also seems to fit due to the relapses I have, but again it does not mention any periods of improvement. Plus it is suppose to be the follow on from RRMS.
Of course we all know the parameters for RRMS. I haven't quite fit those parameters either. It took a good 5 years before my first leveling off of symptoms. But I also wasn't getting any treatment for symptoms and continued to push myself during that period. SO that may be why I didn't get better. Once I stopped pushing myself and started to get some treatment for some of symptoms I was stable for another 5 years.
The next 10 years was another steady decline as I was constantly under a lot of stress trying to find out was wrong with me, moving, not getting treatment, etc. So again there could be a case for why I wasn't having any remissions other than disease type.
Dennis
COMMUNITY LEADER
Hey Dennis,
Wow right, just when you thought you knew this dance, it changes on you and your doing the time warp..........Its just a step to the right lol
As far as I can tell, there hasn't been a specific time frame put on improvements to classify it as the remitting part of RRMS, official or otherwise. It seems to be 'any' improvements is remitting, but it does need a period of stability (new normal) or even continual improvement.
I gather though, if you relapse sx's return in less than 30 days and they don't class that as another relapse but a continuation of, then what ever improvements had would kind of be irrelevant, if wasn't for long enough. So on that note, maybe that 30 days could also be thought of as the minimum time frame needed, for not only the relapse part but the remittance part too.
I've got to say there is nothing like the feeling of when the fatigue starts to lift, its often the time when i have such a change in energy that my focus is on getting back strength, flexibility, muscle etc and i do toast my self lol but i so feel like i'm alive!
But wait... if your dx PPMS then you are not suppose to get 'any' improvements. PPMS = a continual decline and no remittance, so what's got me scratching my head is your PPMS dx! Might be worth documenting these improvements because your dr might need to rethink, though that could be just a can of worms you don't need with the VA.
WOOWHOO fingers crossed for your days to be more like today or better!
Cheers.........JJ
Wow right, just when you thought you knew this dance, it changes on you and your doing the time warp..........Its just a step to the right lol
As far as I can tell, there hasn't been a specific time frame put on improvements to classify it as the remitting part of RRMS, official or otherwise. It seems to be 'any' improvements is remitting, but it does need a period of stability (new normal) or even continual improvement.
I gather though, if you relapse sx's return in less than 30 days and they don't class that as another relapse but a continuation of, then what ever improvements had would kind of be irrelevant, if wasn't for long enough. So on that note, maybe that 30 days could also be thought of as the minimum time frame needed, for not only the relapse part but the remittance part too.
I've got to say there is nothing like the feeling of when the fatigue starts to lift, its often the time when i have such a change in energy that my focus is on getting back strength, flexibility, muscle etc and i do toast my self lol but i so feel like i'm alive!
But wait... if your dx PPMS then you are not suppose to get 'any' improvements. PPMS = a continual decline and no remittance, so what's got me scratching my head is your PPMS dx! Might be worth documenting these improvements because your dr might need to rethink, though that could be just a can of worms you don't need with the VA.
WOOWHOO fingers crossed for your days to be more like today or better!
Cheers.........JJ
Awesome news! I think I have only had 2 attacks so far in the last 8 months and the first was a doozy.
I have felt really good for over a month but still can't do more than work through the week and I sleep a lot. I average 12-14 hours per day over the weekend.
I assume the is the remitting part of my RRMS and I have been almost 5 months since my last relapse. A lot of issues with heat and humidity but nothing long lasting.
I hooe your remissiin stays a long time!
Corrie
I have felt really good for over a month but still can't do more than work through the week and I sleep a lot. I average 12-14 hours per day over the weekend.
I assume the is the remitting part of my RRMS and I have been almost 5 months since my last relapse. A lot of issues with heat and humidity but nothing long lasting.
I hooe your remissiin stays a long time!
Corrie
Hey, Dennis! I'm glad you're feeling better these days. I'd just consider it a blessing, and get the exercise I should (I like Yoga, walking, light cycling), and continue to treat myself well. Keep up the good work!
Unfortunately, there's not a whole lot out there for PPMS descriptions. I have read, though that even though you folks don't "relapse", per se, there are punctuations of plateaux, or times of feeling stable. Enjoy this while you can!
Unfortunately, there's not a whole lot out there for PPMS descriptions. I have read, though that even though you folks don't "relapse", per se, there are punctuations of plateaux, or times of feeling stable. Enjoy this while you can!
I can chime in with any authority here, but I will chime in with a 'Hip hip hooray!' Long may it continue, Dennis.
Thanks Dan & Lulu!
Lulu I do remember that time frame about being a new relapse just as you do.
While I am feeling better I am finding that I am VERY VERY hesitant about doing things despite having the energy. I guess I am afraid I'll do too much and end up in another flare if this really is a remission.
The only thing I can come up with as to why is that just before I started feeling good I was a lot more fatigued than usual. I had slept for 10 hours at night, got up for 30 minutes before heading back to bed and slept another 8 hours. Then I was up for 6 hours before another 8 hours of sleep. It was the next morning that I noticed the start of feeling better.
I had read somewhere that the body does its repair while we are sleeping, so maybe I needed all of that sleep at once for some of the damage to be repaired?
Dennis
Lulu I do remember that time frame about being a new relapse just as you do.
While I am feeling better I am finding that I am VERY VERY hesitant about doing things despite having the energy. I guess I am afraid I'll do too much and end up in another flare if this really is a remission.
The only thing I can come up with as to why is that just before I started feeling good I was a lot more fatigued than usual. I had slept for 10 hours at night, got up for 30 minutes before heading back to bed and slept another 8 hours. Then I was up for 6 hours before another 8 hours of sleep. It was the next morning that I noticed the start of feeling better.
I had read somewhere that the body does its repair while we are sleeping, so maybe I needed all of that sleep at once for some of the damage to be repaired?
Dennis
I'm thinking the 30 day reference has to do with the lenght of time between new symptoms to qualify as a new relapse. Remissions don't have a length of time, from what I know. But as you know, I am no medical expert.
Dennis, so glad you are feeling better. Maybe the sun, moon and stars are aligned properly for a change. Whatever it is, I hope it keeps up for you.
Dennis, so glad you are feeling better. Maybe the sun, moon and stars are aligned properly for a change. Whatever it is, I hope it keeps up for you.
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