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Question of the Month (July '13): Relapses
WHAT DO YOU EXPERIENCE WITH A RELAPSE?
Many of us have to deal with relapse, but we all may not know if what we personally experience is a relapse ~ especially in the first year after diagnosis. And, to make it ever more difficult there is no handy "exact" fact sheet we can all go to that distinguishes what our relapse is, as compared to another MSer's relapse.
Well, that is of course, if the magic ball isn't available :)
SO, what we'd like to focus on for July's Question of the month is NOT NECESSARILY the problems we are having making that determination, but exactly WHAT DO YOU EXPERIENCE?
Is there is a pattern (i.e., do you get 3 a year, or 1) and how long do they last?
Please include your personal experiences, your coping techniques and means of relapse determination (if you have that guage). This will help so many seeking support and shared experiences on this topic.
Relapse can be so difficult it's important we help each other out. For those in secondary phases of MS, please lend your past experiences and wisdom.
Thanks for sharing and caring.
~Your MS Community Leaders
FYI to all:
Our Monthly Question focuses on a specific topic. There are no right or wrong answers - we just want to hear about your experiences, whether you’re a veteran of this forum or are new and have been lurking, waiting for inspiration to share your thoughts.
Please let us know if you have a question you would like to see pondered in a future month.
Many of us have to deal with relapse, but we all may not know if what we personally experience is a relapse ~ especially in the first year after diagnosis. And, to make it ever more difficult there is no handy "exact" fact sheet we can all go to that distinguishes what our relapse is, as compared to another MSer's relapse.
Well, that is of course, if the magic ball isn't available :)
SO, what we'd like to focus on for July's Question of the month is NOT NECESSARILY the problems we are having making that determination, but exactly WHAT DO YOU EXPERIENCE?
Is there is a pattern (i.e., do you get 3 a year, or 1) and how long do they last?
Please include your personal experiences, your coping techniques and means of relapse determination (if you have that guage). This will help so many seeking support and shared experiences on this topic.
Relapse can be so difficult it's important we help each other out. For those in secondary phases of MS, please lend your past experiences and wisdom.
Thanks for sharing and caring.
~Your MS Community Leaders
FYI to all:
Our Monthly Question focuses on a specific topic. There are no right or wrong answers - we just want to hear about your experiences, whether you’re a veteran of this forum or are new and have been lurking, waiting for inspiration to share your thoughts.
Please let us know if you have a question you would like to see pondered in a future month.
Yeah, and this has not been a good couple of days for me, healthwise. Pins &I needles showing up at random, twitches galore, balance way out of whack, vision crummy, and the digestive tract has decided to chime in (dietary issue there, though). Lower back pain, too, more than usual, and VBS started (without me) tonight.
Whatever my Mystery Sickness is, I understand why Lu calls hers MiSerable.
Whatever my Mystery Sickness is, I understand why Lu calls hers MiSerable.
With all my major relapses I have had extreme fatigue, much worse than my daily fatigue, my energy level will be so low, walking across the room to use the bathroom is difficult.
I always experience weakness with my relapses. I also notice an increase in twitches, jumpiness and tremors.
My other symptoms have varied with each relapse...
Dizziness, numbness, leg pain, balance issues, Severe headache, burning pain back of head and/or face, spasms.
When I have a major relapse I know it. But I also continue to have symptoms pop up even when I am not in a true relapse. I know heat and stress definitely affect me, but sometimes I can't find a reason for the symptoms other than it is just this crazy MS!
I always experience weakness with my relapses. I also notice an increase in twitches, jumpiness and tremors.
My other symptoms have varied with each relapse...
Dizziness, numbness, leg pain, balance issues, Severe headache, burning pain back of head and/or face, spasms.
When I have a major relapse I know it. But I also continue to have symptoms pop up even when I am not in a true relapse. I know heat and stress definitely affect me, but sometimes I can't find a reason for the symptoms other than it is just this crazy MS!
Hi there, I've not had an opportunity to say welcome to you so hello, and welcome, sorry for your dx, but nice to have you with us!
My symptoms are different than my attack. I believe many of my symptoms are directly related to existing damage. That doesn't hold true for all, but it is for me.
See you around!
-shell
My symptoms are different than my attack. I believe many of my symptoms are directly related to existing damage. That doesn't hold true for all, but it is for me.
See you around!
-shell
Heat is causing me more of a problem than before. I've long been a heavy ice-water drinker, but I am trying to add to it even more. Still, I notice that heat (especially accompanied by activity, like the work on the porch trim and other honey-do list stuff that's kept me from sermon prep for two days) brings my main symptoms back faster than stress.
I totally forgot ( LOL) surprise..... about the spasticity, and the twitches increase, especially when we try and rest.
And, like I said, my bladder became affected , and that has been the newest problelm
Heat and noise sensitivity too, heat if it is humid especially, but the loud voices and noises, I usually have to walk away .......
And, like I said, my bladder became affected , and that has been the newest problelm
Heat and noise sensitivity too, heat if it is humid especially, but the loud voices and noises, I usually have to walk away .......
I have had a few attacks. I have SPMS and things change with progressive.
I have eye problems, / focusing, and funny lines and flashing
numbness of scalp, and tongue,
lots of problems exsarabed on my left side .... normally a limp, but in a relapse a much more pronounced strange gait
Extreme fatigue,
cog fog as we call it, confusion, and not able to stay on task for very long.
Sometimes my leg will give out on me, and I will fall
My hands get so very stiff that it is hard to open them up.....
THese are some of the things that have happened to me over the last couple of attacks.
Actually, it was after the last bad one, that my bladder quit working, and now I have to use a catheter all the time.....
It sounds horrible, but, I have to say, it could be lots worse, and I am doing ok ...
Hope this helps some of you,
take good care,
Candy
I have eye problems, / focusing, and funny lines and flashing
numbness of scalp, and tongue,
lots of problems exsarabed on my left side .... normally a limp, but in a relapse a much more pronounced strange gait
Extreme fatigue,
cog fog as we call it, confusion, and not able to stay on task for very long.
Sometimes my leg will give out on me, and I will fall
My hands get so very stiff that it is hard to open them up.....
THese are some of the things that have happened to me over the last couple of attacks.
Actually, it was after the last bad one, that my bladder quit working, and now I have to use a catheter all the time.....
It sounds horrible, but, I have to say, it could be lots worse, and I am doing ok ...
Hope this helps some of you,
take good care,
Candy
Like Corriel, I am newly diagnosed (05/13/13). ON is what lead to my Dx, although thinking back my first attack was likely a year earlier when both feet went numb/tingly for a few weeks. While be treated for the ON I had some numbness on the right side of my tongue, lip and chin. That has since resolved but I always wonder whether it was the same or a different attack. I've also had stiffness, fatigue and muscle twitching. The twitching has begun to subside so that, too, is consistent with what Corriel experienced. I guess my question is are attacks, i.e., clearly defined flares, different from everyday symptoms like fatigue, stiffness, etc.?
I have only had 2 attacks, both prior to my dx in April this year. They were 5 months apart and very similar.
First attack:
Complete loss of vision in the lower left quarter of each eye, and cognitive issues resulting in basic functions (alphabetizing, prioritizing, tripping over words, etc.) and ridiculous fatigue.
Symptoms started to lessen after about 8 weeks and vision was almost 100% after 4 months.
Second atrack:
Vision loss in the same lower left quarter of one eye (not both this time), fatigue and irritability.
Symptoms started to get better after about 3 weeks and resolved in about 6 weeks.
I seem to have a lot of muscle twitching followimg attacks that seem to start when the worst of the attack is over but continues for weeks after the attack is over.
I am still trying to figure out if I will have frequent attacks since my first two were so close together and I have only been on Rebif for 3 weeks. My attacks were 5 months apart and it has been almost 5 months since the last one so I am keeping a close eye out for symptoms, pardon the pun. :-)
I don't seem to notice or feel an attack coming on so I find that frustrating. I just wake up not being able to see properly.
Corrie
First attack:
Complete loss of vision in the lower left quarter of each eye, and cognitive issues resulting in basic functions (alphabetizing, prioritizing, tripping over words, etc.) and ridiculous fatigue.
Symptoms started to lessen after about 8 weeks and vision was almost 100% after 4 months.
Second atrack:
Vision loss in the same lower left quarter of one eye (not both this time), fatigue and irritability.
Symptoms started to get better after about 3 weeks and resolved in about 6 weeks.
I seem to have a lot of muscle twitching followimg attacks that seem to start when the worst of the attack is over but continues for weeks after the attack is over.
I am still trying to figure out if I will have frequent attacks since my first two were so close together and I have only been on Rebif for 3 weeks. My attacks were 5 months apart and it has been almost 5 months since the last one so I am keeping a close eye out for symptoms, pardon the pun. :-)
I don't seem to notice or feel an attack coming on so I find that frustrating. I just wake up not being able to see properly.
Corrie
These ae great to read - I've always felt that some of the things I experienced with my MS attack were not exactly like others (there were a handful of things the same, but not the on and off what I describe as ability to react).
But now, reading Gymp's descrip of the paralysis, this is very similar to mine, but for me it wasn't full time. It would last for seconds at a time throughout my days. As if someone would literally flip my on and off switch all day long.
Keep em coming folks... there are still a couple weeks in July left, and we got July up a little late.
-shell
But now, reading Gymp's descrip of the paralysis, this is very similar to mine, but for me it wasn't full time. It would last for seconds at a time throughout my days. As if someone would literally flip my on and off switch all day long.
Keep em coming folks... there are still a couple weeks in July left, and we got July up a little late.
-shell
It's interesting that several of you have mentioned the sound sensitivity thing. I was diagnosed with Menier's a long time ago and always blame my tinitus and sensitivity and even my balance in the past on it. Now I'm thinking about that, maybe it's not all due to the MS.
Very interesting topic, I was diagnosed in 09.
I never know when I'm having a relapse because I am fatigued, tingling, leg weakness, brain fog, cannot be around a lot of people.
Cannot function if there is to much noise or more than 1 person speaking at a time.
I also get very temperamental ( bitchy ) I get very frustrated when I cannot get my point across.
I have all of this all the time.
I am diagnosed with RRMS. But I never feel normal.
I never know when I'm having a relapse because I am fatigued, tingling, leg weakness, brain fog, cannot be around a lot of people.
Cannot function if there is to much noise or more than 1 person speaking at a time.
I also get very temperamental ( bitchy ) I get very frustrated when I cannot get my point across.
I have all of this all the time.
I am diagnosed with RRMS. But I never feel normal.
You people all sound terrible! Just like me!
Seriously, I am STILL undx, but:
I began this journey thinking "stroke," as did my PCP. Very, very bad vertigo; had me crawling from room to room, and sometimes stopping that to wait for the room to catch up to me. Sudden onset one morning as I got out of bed and hit the floor -- twice.
It faded away over a couple of days. Tests showed nothing. Then, it came back one day several months later. This time, it stayed for a few weeks, and I began having visual symptoms, then pain behind the eyeballs, during those few weeks. Toward the end of that, the balance and vision were near tolerable, but the eye pain worsened. I am still on gabapentin for that.
Of course, in the middle of all of this, my wife died. She had plenty of reasons, but it still came as a horrible shock. I never did see a connection, though, with my ups o dwns.
Realized I have double vision in each eye; they put a prism in my eyeglass Rx, and that's near enough fixed to ignore.
Some months afterward, with all of it lingering enough to be troublesome, some close friends prayed for me, and it all went away -- that very same afternoon. It stayed away for 30 wonderful months.
Oh, those kajillion-dollar glasses went with me on a canoe trip, never to be seen again. Funny, the replacements cost just as much.
Last September, I tried to ignore my slowly returning balance problem, but others began to notice it, too,especially at my nephew's wedding. I didn't have a drop of alcohol; I swear. Couldn't tell it by my gait, though.
Then the eye pain worsened. Now I have some visual stuff, too. Some days are better than others, but most days it's as before: troublesome. Not what I think of as "disabling," but a constant source of aggravation and uncertainty.
The's lots more, but to answer the original question, to me, a "relapse" seems to be when "it" comes back but doesn't go away by the next day, or at least the day after that, and I can't hide "it" from others in my ("new") household. "It" has now been named Mystery Sickness, cuz the docs can't bring themselves to say those initials.
Seriously, I am STILL undx, but:
I began this journey thinking "stroke," as did my PCP. Very, very bad vertigo; had me crawling from room to room, and sometimes stopping that to wait for the room to catch up to me. Sudden onset one morning as I got out of bed and hit the floor -- twice.
It faded away over a couple of days. Tests showed nothing. Then, it came back one day several months later. This time, it stayed for a few weeks, and I began having visual symptoms, then pain behind the eyeballs, during those few weeks. Toward the end of that, the balance and vision were near tolerable, but the eye pain worsened. I am still on gabapentin for that.
Of course, in the middle of all of this, my wife died. She had plenty of reasons, but it still came as a horrible shock. I never did see a connection, though, with my ups o dwns.
Realized I have double vision in each eye; they put a prism in my eyeglass Rx, and that's near enough fixed to ignore.
Some months afterward, with all of it lingering enough to be troublesome, some close friends prayed for me, and it all went away -- that very same afternoon. It stayed away for 30 wonderful months.
Oh, those kajillion-dollar glasses went with me on a canoe trip, never to be seen again. Funny, the replacements cost just as much.
Last September, I tried to ignore my slowly returning balance problem, but others began to notice it, too,especially at my nephew's wedding. I didn't have a drop of alcohol; I swear. Couldn't tell it by my gait, though.
Then the eye pain worsened. Now I have some visual stuff, too. Some days are better than others, but most days it's as before: troublesome. Not what I think of as "disabling," but a constant source of aggravation and uncertainty.
The's lots more, but to answer the original question, to me, a "relapse" seems to be when "it" comes back but doesn't go away by the next day, or at least the day after that, and I can't hide "it" from others in my ("new") household. "It" has now been named Mystery Sickness, cuz the docs can't bring themselves to say those initials.
My relapses have changed over the years. In the 70s (3 incidences), it was pseudobulbar and burning patches of skin on my right arm and leg. Usually these relapses lasted 2-6 weeks at a time.
In the 80s (4 incidences), I got the same burning patches, and the addition laryngeal spasms and loss of voice (but not laryngitis). Again, 2-6 weeks at a time.
In the 90s (2 incidences), it was profound weakness, and fatigue, and again, the burning patches. It was rare that I ever got sick, but the two times in ten years were associated with relapses.
Now, and over the last 13 years or so, it goes like this:
*Extreme fatigue
*Extreme weakness
*Marked increase in spasms and spasticity
*Marked increase in sensory symptoms
*Ataxia
*Tremor
And then the icing on the cr@ppy cake is Trigeminal Neuralgia. I've had this twice in the last 7 years, the most recent in January-March of this year. It's rearing it's ugly head again in the last two weeks, especially if I'm tired or stressed.
Much of the time, I just remind myself that this, too, will pass. I've only had IVSM twice, and when my TN was at its worst, I was on 1500 mg each of Gabapentin and Trileptal.
At this point in time, I'm having 2-3 mild relapses/year.
In the 80s (4 incidences), I got the same burning patches, and the addition laryngeal spasms and loss of voice (but not laryngitis). Again, 2-6 weeks at a time.
In the 90s (2 incidences), it was profound weakness, and fatigue, and again, the burning patches. It was rare that I ever got sick, but the two times in ten years were associated with relapses.
Now, and over the last 13 years or so, it goes like this:
*Extreme fatigue
*Extreme weakness
*Marked increase in spasms and spasticity
*Marked increase in sensory symptoms
*Ataxia
*Tremor
And then the icing on the cr@ppy cake is Trigeminal Neuralgia. I've had this twice in the last 7 years, the most recent in January-March of this year. It's rearing it's ugly head again in the last two weeks, especially if I'm tired or stressed.
Much of the time, I just remind myself that this, too, will pass. I've only had IVSM twice, and when my TN was at its worst, I was on 1500 mg each of Gabapentin and Trileptal.
At this point in time, I'm having 2-3 mild relapses/year.
For me:
Aphasia
1/2 of my face and scalp goes numb. Tongue too.
More pronounced weakness of my old symptoms- (this time my left arm was nearly paralyzed).
Confusion
Extreme sensitivity to loud noises
Extreme Exhaustion
Blurriness and pain in my right eye. (or sometimes my left)
Digestion seems to stop
Increased spasticity
+ there may be new issues.
If all of these things occur, and stick around for a few days, and I don't have a fever, I suspect a relapse. I usually only medicate if it's serious.
Tammy
Aphasia
1/2 of my face and scalp goes numb. Tongue too.
More pronounced weakness of my old symptoms- (this time my left arm was nearly paralyzed).
Confusion
Extreme sensitivity to loud noises
Extreme Exhaustion
Blurriness and pain in my right eye. (or sometimes my left)
Digestion seems to stop
Increased spasticity
+ there may be new issues.
If all of these things occur, and stick around for a few days, and I don't have a fever, I suspect a relapse. I usually only medicate if it's serious.
Tammy
Hi Kyle,
I'm going to follow your lead here with the way you wrote this out because it's so organized and easy to understand read!
I have not had a major relapse since my initial dx of RRMS in 2007, which lasted for months. Mine was less gradual, began w/slurred speech and fatigue for a week and then whammo below hit me (I thought it was a stroke):
My suspects consisted of:
~ataxia
~slurred speach
~aphasia
~fatigue
Lost ability to react, i.e., while cooking I couldn't grab the spatula, while chewing, I had to think through the process to finish/swallow. When writing midstream, everything would just cease (for seconds) and I couldn't finish the task, to name but a few. This was intermittent and happened on and off all throughout my days during the attack.
~hypersensitive to sound
6 years out, I've not returned to my complete baseline prior to the attack, but I can think walk, talk, chew, work, etc. Over I'd say 5 months the majors eased up. And, I was left with residuals of those things mentioned.
I've had on and off problems over the years, but nothing rises to what I consider a major attack (I use that first one as my gauge).
I was faithful to a disease modifier for 5 years (rebif) and now looking at new DMD options.
I'm going to follow your lead here with the way you wrote this out because it's so organized and easy to understand read!
I have not had a major relapse since my initial dx of RRMS in 2007, which lasted for months. Mine was less gradual, began w/slurred speech and fatigue for a week and then whammo below hit me (I thought it was a stroke):
My suspects consisted of:
~ataxia
~slurred speach
~aphasia
~fatigue
Lost ability to react, i.e., while cooking I couldn't grab the spatula, while chewing, I had to think through the process to finish/swallow. When writing midstream, everything would just cease (for seconds) and I couldn't finish the task, to name but a few. This was intermittent and happened on and off all throughout my days during the attack.
~hypersensitive to sound
6 years out, I've not returned to my complete baseline prior to the attack, but I can think walk, talk, chew, work, etc. Over I'd say 5 months the majors eased up. And, I was left with residuals of those things mentioned.
I've had on and off problems over the years, but nothing rises to what I consider a major attack (I use that first one as my gauge).
I was faithful to a disease modifier for 5 years (rebif) and now looking at new DMD options.
I have not had a relapse since my diagnosis, in October of 2011. It's difficult to say whether that's due to Tysabri or that my initial DX was SPMS.
The relapse that lead to my DX was my third, spread out over 20 years. THe most recent relapse included many of the usual suspects;
* Extreme fatigue
* Heat sensitivity
* Muscle weakness
* Double Vision (Nystagmus, not optic neuritis)
* Ataxia (Drunk Walk)
* Pruritus (itching)
The symptoms came on gradually, one at a time. After about a month they were all present all the time. 5 Day IVSM + oral taper made them all go away. The relief was almost instant. By the end of the 5 days I felt almost normal.
You often don't know how sick you were until you feel well again :-)
Kyle
The relapse that lead to my DX was my third, spread out over 20 years. THe most recent relapse included many of the usual suspects;
* Extreme fatigue
* Heat sensitivity
* Muscle weakness
* Double Vision (Nystagmus, not optic neuritis)
* Ataxia (Drunk Walk)
* Pruritus (itching)
The symptoms came on gradually, one at a time. After about a month they were all present all the time. 5 Day IVSM + oral taper made them all go away. The relief was almost instant. By the end of the 5 days I felt almost normal.
You often don't know how sick you were until you feel well again :-)
Kyle
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