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MS Marches On!
In another thread JJ talks about what scares us most about having MS. For me it's the insideous progression. Not the obvious, like 'I could walk yesterday, but can't today.", rather the little nearly imperceptable changes like 'I caught my toe twice today."
I've been relying on Rituxan to fight the battle for me. It's been 9 months since my first infusions. Frim the 6th minth on I've been getting blood tests to make sure my CD19 levels were low, indicating that the rituximab is sitll working. They have been. On Saturday I had an MRI, in advance of my annual Neuro visit. The radiology report included the following.
"1. Stable examination. Stable white matter disease related to patient's history of multiple sclerosis. None of the lesions demonstrate MRI findings to suggest active demyelination."
This is about as good as it gets MRI wise.
So if the RItuxan is working, and my MRI is stable, why do I feel like MS is worming further into my daily life? Is my balance getting worse or am I just more aware of it? Are my bladder issues progressing or is it just my imagination? Absent any imperical evidence, how do we measure progression?
Inquiring minds want to know!
Kyle
I've been relying on Rituxan to fight the battle for me. It's been 9 months since my first infusions. Frim the 6th minth on I've been getting blood tests to make sure my CD19 levels were low, indicating that the rituximab is sitll working. They have been. On Saturday I had an MRI, in advance of my annual Neuro visit. The radiology report included the following.
"1. Stable examination. Stable white matter disease related to patient's history of multiple sclerosis. None of the lesions demonstrate MRI findings to suggest active demyelination."
This is about as good as it gets MRI wise.
So if the RItuxan is working, and my MRI is stable, why do I feel like MS is worming further into my daily life? Is my balance getting worse or am I just more aware of it? Are my bladder issues progressing or is it just my imagination? Absent any imperical evidence, how do we measure progression?
Inquiring minds want to know!
Kyle
I can totally relate to everyone who has posted! MS is indious despite what the MRI says. I have experienced and still do every one of the above sympt6oms.
I am grateful that my older neuro "gets it" like everyone here and always asks about daily issues when I see him. He addresses them as best as he can pharmacologically and is very supportive of my difficulties which is a blessing!
I do hope all of you get to a better place. And as mentioned above, it's the gray matter damage that is causing a lot of the damage and symptoms. Even my wise neuro acknowledges that.
My Best to All of you,
Ren
I am grateful that my older neuro "gets it" like everyone here and always asks about daily issues when I see him. He addresses them as best as he can pharmacologically and is very supportive of my difficulties which is a blessing!
I do hope all of you get to a better place. And as mentioned above, it's the gray matter damage that is causing a lot of the damage and symptoms. Even my wise neuro acknowledges that.
My Best to All of you,
Ren
Thank You! Reading these responses just sums up everything! Even well-meaning people just do not get it. The one I hear all the time when I say I am exhausted is..."Oh I didn't sleep well either. Little do they know I may have slept for 8 hours - like Ess said...tired all day go to bed tired, and wake up that way. I also want to ask ...when you are tired can you still walk, think, carry things, cause I can't. It definitely gets frustrating!
The best is when people mumble under their breath when they are behind me..."Could you go any slower"? I have actually responded, of course I can walk faster, I am just doing this to anger you! seriously people do you think I like the fact that it takes me two hours to food shop! Again frustrating!!!
The best is when people mumble under their breath when they are behind me..."Could you go any slower"? I have actually responded, of course I can walk faster, I am just doing this to anger you! seriously people do you think I like the fact that it takes me two hours to food shop! Again frustrating!!!
oops! I should have said use the yahoo search engine to find the blog.
or on google you can search
'why don't my mri images match my symptoms'
or on google you can search
'why don't my mri images match my symptoms'
It's called clinical radiographic paradox - when the MRI results don't match the clinical symptoms. It gets even more complex because the symptoms we have can be physical or subjective. The physical ones are easy to find, but the subjective ones can be much harder to trace. You know the MS quality of life surveys we get assked to complete by the doctor? those are almost always subjective items and involve socialization, depression, family support and so on. None of those can be measured but if they are a problem they can manifest as a true symptom that we feel and cause a decline in our well being.
And then there is the problem that today's MRI only does impaging of the white matter and it is now known that MS begins and continues in the gray matter. There may be lesions there that although unseen are causing additional problems.
If you google "radiographic paradox multiple sclerosis" you will find my blog on this topic.it's written about the conversation I had with my neuro on this very question.
All of this falls in the category of our disease would be much easier to understand and track if it were something visible like missing a limb instead of being hidden in our bodies.
COMMUNITY LEADER
If its already well established knowledge that you can't accurately map sx's to lesions, then why is there still the consistent idealisation of the MRI being the deciding factor on progression or stability.........Is it a simple matter of a differing concepts between medical personnel and patient, with the patient more concerned with the practical meaning of progression and the neuro's concern having more to do with objective data of lesion development?
I have a sneaking suspicion that neuro's have similar issues to other medical fields, the marrying together of objective data and the patient. The patient lives in the reality of their condition but the doctor, no matter how good they are, they simply don't have the same knowledge and understanding that the patient has of the subtle changes, no way to get what 'progression' actually 'feels' like.
I'll have to leave it there, i'm trying to type with a wrist splint on my dominant hand lol it's harder than i thought it would be......
Food for thought..........JJ
I have a sneaking suspicion that neuro's have similar issues to other medical fields, the marrying together of objective data and the patient. The patient lives in the reality of their condition but the doctor, no matter how good they are, they simply don't have the same knowledge and understanding that the patient has of the subtle changes, no way to get what 'progression' actually 'feels' like.
I'll have to leave it there, i'm trying to type with a wrist splint on my dominant hand lol it's harder than i thought it would be......
Food for thought..........JJ
I think we have to conclude that 'they' don't get it, even if the 'they' are MS neuros. So thank god for 'us.' because we do get it.
ess
ess
Albeit late, I have to chime in because I was trying to get my head around this very topic the other day.
Was Dx May 2013, started TEC in June 2013 and have been seen by my MS Neuro every quarter since. He always uses words like "healing", "improved" and "stable". My recent imaging supported that, i.e., no new lesions and the existing lesions shrank. So why is it I have daily symptoms and other subtle reminders of the disease?
For instance, my muscles twitch every day all day long. Most frustrating, he tells me this is not an MS symptom. That's funny, never had this until my first flare. In fact, I can even remember the day I experienced that first twitch just above my left knee on the inner thigh.
Then there is the cognitive stuff like forgetting words. The other day I couldn't remember the word lobby. I was telling a story about a certain hotel at which I stayed and had to say, "you know, the main entrance area where you check in". Ugghhh
Let's also talk about the clumsiness. I drop something everyday. Usually on the transfer. Like when I am sending my keys from my right hand to my left so I can pick up something else, invariably they end up on the floor.
Currently, I have no strength issues. I am getting stronger by the day through weight training. I feel and see that. It's just the small subtle things that you all mention that provide daily reminders and drive me crazy because I constantly wonder what's really going on inside.
My opinion. I don't think anyone, even the "specialists", really understand a lot about this disease. There is so much conflicting information even amongst sources of authority.
I think all we can do is focus on what we still have, live one day at a time and not worry about things we can't control. That sounds great, just don't think I can do it!
Eric
Was Dx May 2013, started TEC in June 2013 and have been seen by my MS Neuro every quarter since. He always uses words like "healing", "improved" and "stable". My recent imaging supported that, i.e., no new lesions and the existing lesions shrank. So why is it I have daily symptoms and other subtle reminders of the disease?
For instance, my muscles twitch every day all day long. Most frustrating, he tells me this is not an MS symptom. That's funny, never had this until my first flare. In fact, I can even remember the day I experienced that first twitch just above my left knee on the inner thigh.
Then there is the cognitive stuff like forgetting words. The other day I couldn't remember the word lobby. I was telling a story about a certain hotel at which I stayed and had to say, "you know, the main entrance area where you check in". Ugghhh
Let's also talk about the clumsiness. I drop something everyday. Usually on the transfer. Like when I am sending my keys from my right hand to my left so I can pick up something else, invariably they end up on the floor.
Currently, I have no strength issues. I am getting stronger by the day through weight training. I feel and see that. It's just the small subtle things that you all mention that provide daily reminders and drive me crazy because I constantly wonder what's really going on inside.
My opinion. I don't think anyone, even the "specialists", really understand a lot about this disease. There is so much conflicting information even amongst sources of authority.
I think all we can do is focus on what we still have, live one day at a time and not worry about things we can't control. That sounds great, just don't think I can do it!
Eric
I guess that one saving grace from this whole thing is that we do get that we don't get others' illnesses, if that makes any sense.
My lifelong friend has post-polio syndrome. (We were together at the beach at age 6 when she got polio and I didn't. Go figure.) Oddly enough, though from entirely different causes, the symptoms of post-polio can be very much like those of MS. But even if they weren't, I do get it when she can't shop another minute, or has to take a nap NOW, and so on. She seldom complains, but she knows her limits and sticks to them. I'm still learning from her.
ess
My lifelong friend has post-polio syndrome. (We were together at the beach at age 6 when she got polio and I didn't. Go figure.) Oddly enough, though from entirely different causes, the symptoms of post-polio can be very much like those of MS. But even if they weren't, I do get it when she can't shop another minute, or has to take a nap NOW, and so on. She seldom complains, but she knows her limits and sticks to them. I'm still learning from her.
ess
Ess-
'"Oh yeah, I feel run down sometimes too."
This is a good one RE: You Don't Get It
'"Oh yeah, I feel run down sometimes too."
This is a good one RE: You Don't Get It
One huge but immeasurable factor in the marching of MS is fatigue. I don't care whether my MRIs are stable if I now feel constantly exhausted. Go to bed tired, wake up tired, tired all day.
ess
ess
Tell us how you really feel DV :-)
All of the things described here, the "little", often invisible things, that fall into the insideous MS creep category. If I drop my keys after opening the second lock on my door today, tomorrow maybe I drop them as I'm trying to put the key into the second lock tomorrow.
Not enough to mention to the doc, not something that will show up in any test, but evidence that MS marches on...
Kyle
All of the things described here, the "little", often invisible things, that fall into the insideous MS creep category. If I drop my keys after opening the second lock on my door today, tomorrow maybe I drop them as I'm trying to put the key into the second lock tomorrow.
Not enough to mention to the doc, not something that will show up in any test, but evidence that MS marches on...
Kyle
Yes, house keys. On the porch. Every day.
Car key. Slips through my numb fingers into the space between driver's seat and console. This space is wide enough for a car key to fall into but not wide enough for my hand to fit in order to reach for that key. It's roughly a 5 minute exercise of moving the seat to just the right position to be able to see where key landed and then more adjusting in order to fit my hand in to grab key. 9 times out of 10 I will drop it again sending it further out of reach.
The 15 minute unproductive pee. I'm familiar with it. That one nortriptyline's fault. Not as bad as amitriptyline though.
Dropping my boarding pass at the airport a dozen times between check-in to security to customs to gate agent to aircraft.
Having to ask my husband to open a bottle of Perrier for me because of numb, weak, clumsy hands. Or a bottle of wine. Or a twist-off cap beer. Or to open a bag of chips. Or one of those little fast food ketchup packets. Or basically anything that comes in a sealed bag or a bottle.
Having to ask said husband to put the room service tray out in the hall when we're done because the last time I attempted to do so I bent a little too far forward whilst crouching, lost my balance and fell face first into the tray with a very loud clatter. First, look around and make sure there are no witnesses. Second, look for bleeding.
Again, asking husband (patient, supportive and occasionally annoyed husband) to straighten my hair on the back of my head because I can't see what I'm doing, can't feel it with my numb hands, and can't sense where my hands are due to messed up proprioception. Today I attempted this activity of daily living on my own, resulting in flat-ironing my entire left index finger with flat iron at 410 degrees, and due to slow nerve signals from brain to finger and back, it was clamped on long enough to leave me with a nice, big and very straight blister the length of my finger.
"Yeah, I don't love the heat either." Someone told me this just yesterday. I know they're trying to try to identify with me, be empathic, etc. But it actually distances me from them because it tells me they do not get it, although really, why should they? I wouldn't have had a clue about this pre-2007. I want to scream Does heat debilitate you? Blur your vision? Make you see double? Make your eyeballs twitchy? Numb your extremities and make them feel like they've fallen asleep? Make you feel like you're suddenly wearing a corset two sizes two small and tied tighter than necessary? Walk into walls leaving bruises on shoulders and elbows? Get vertigo so bad that the room is spinning and you feel like you might fall down/ throw up/ pass out? Make you feel like your walking on sand mixed with shards of glass, or like you're walking waist deep in mud? Make you confused, forgetful, inarticulate, and drunk-sounding? Give you a weak, hoarse voice? No? So I WANT to say: See, it's not so much that I "don't love" the heat, as it is that it disables me in all of these ways and more.
Whew. Guess I've been needing to get that off my chest for a while.
Car key. Slips through my numb fingers into the space between driver's seat and console. This space is wide enough for a car key to fall into but not wide enough for my hand to fit in order to reach for that key. It's roughly a 5 minute exercise of moving the seat to just the right position to be able to see where key landed and then more adjusting in order to fit my hand in to grab key. 9 times out of 10 I will drop it again sending it further out of reach.
The 15 minute unproductive pee. I'm familiar with it. That one nortriptyline's fault. Not as bad as amitriptyline though.
Dropping my boarding pass at the airport a dozen times between check-in to security to customs to gate agent to aircraft.
Having to ask my husband to open a bottle of Perrier for me because of numb, weak, clumsy hands. Or a bottle of wine. Or a twist-off cap beer. Or to open a bag of chips. Or one of those little fast food ketchup packets. Or basically anything that comes in a sealed bag or a bottle.
Having to ask said husband to put the room service tray out in the hall when we're done because the last time I attempted to do so I bent a little too far forward whilst crouching, lost my balance and fell face first into the tray with a very loud clatter. First, look around and make sure there are no witnesses. Second, look for bleeding.
Again, asking husband (patient, supportive and occasionally annoyed husband) to straighten my hair on the back of my head because I can't see what I'm doing, can't feel it with my numb hands, and can't sense where my hands are due to messed up proprioception. Today I attempted this activity of daily living on my own, resulting in flat-ironing my entire left index finger with flat iron at 410 degrees, and due to slow nerve signals from brain to finger and back, it was clamped on long enough to leave me with a nice, big and very straight blister the length of my finger.
"Yeah, I don't love the heat either." Someone told me this just yesterday. I know they're trying to try to identify with me, be empathic, etc. But it actually distances me from them because it tells me they do not get it, although really, why should they? I wouldn't have had a clue about this pre-2007. I want to scream Does heat debilitate you? Blur your vision? Make you see double? Make your eyeballs twitchy? Numb your extremities and make them feel like they've fallen asleep? Make you feel like you're suddenly wearing a corset two sizes two small and tied tighter than necessary? Walk into walls leaving bruises on shoulders and elbows? Get vertigo so bad that the room is spinning and you feel like you might fall down/ throw up/ pass out? Make you feel like your walking on sand mixed with shards of glass, or like you're walking waist deep in mud? Make you confused, forgetful, inarticulate, and drunk-sounding? Give you a weak, hoarse voice? No? So I WANT to say: See, it's not so much that I "don't love" the heat, as it is that it disables me in all of these ways and more.
Whew. Guess I've been needing to get that off my chest for a while.
I think the plate dropping thing sums up the creeping impact of MS. For me it's dropping my keys. While there is a dramtically lower breakage rate, it seems every other day I go to put my key on my front door and my keys wind up on the floor.
It's a small thing. No one else would think twice. It's not something my doc would likely comment on, but I know... and this brings me to my gripe about "the little things".
Most of my MS is invisible to the outside world. When the subject of my MS comes up in conversation I try to explain the day to day impact. I have to sit down to put my pants on, lest I fall down. My legs seize up towards the top of a flight of stairs of any length. too much heat and I'm a mess.
To these I often get "Well my balance isn't what it used to be." or "I can't stand the heat either." The responses are well meaning and infuriating :-) I want to tell them to shut the eff up. They have no idea what it's like to have to allot 15 minutes to pee, and then get the job about half done!
Things that may seem small in a vacuum, are magnified In the context of MS. These little quality of life things add up, progress and have no end...
Kyle
It's a small thing. No one else would think twice. It's not something my doc would likely comment on, but I know... and this brings me to my gripe about "the little things".
Most of my MS is invisible to the outside world. When the subject of my MS comes up in conversation I try to explain the day to day impact. I have to sit down to put my pants on, lest I fall down. My legs seize up towards the top of a flight of stairs of any length. too much heat and I'm a mess.
To these I often get "Well my balance isn't what it used to be." or "I can't stand the heat either." The responses are well meaning and infuriating :-) I want to tell them to shut the eff up. They have no idea what it's like to have to allot 15 minutes to pee, and then get the job about half done!
Things that may seem small in a vacuum, are magnified In the context of MS. These little quality of life things add up, progress and have no end...
Kyle
My newish (had no choice) MS neuro told me a few months ago that my MS is stable, has been for several years, and possibly I shouldn't even be on a DMD, given their side effects profiles. How wrong can one doctor be?
This was all based on MRIs, and frankly I don't know how he could even tell that, because large areas are overlapped with lesions, which aren't really countable anyway. He was also ignoring my reports of two relapses, one last spring and one that started this past winter, which by far was and is my worst. His idea is that these represent pseudo-exacerbations and thus not progression. Has his own definitions, obviously.t
Even in his perfunctory mini-examination of me he found new weakness on my left side, which I didn't know was there, as it's all been on the right. Lots more issues causing me doubt, but that's the general idea.
Anyway, in the course of a letter I wrote him I commented that it is my understanding that MS affects the gray matter as well as the white, though as yet there is no way of measuring or visualizing this. I told him I was very familiar with Tecfidera, am aware of side effects, etc., feel I should again be on a DMD, and Tec was my choice.
Since then I'd say things have gone better between us. Everything that can be done medically is being done. Yet I too have the feeling that parts are sort of slipping away. I've had to get real, or more real, with myself concerning what I can and cannot do. It's a good thing I'm retired because I couldn't possibly work. Maybe I could do the mental part
This was all based on MRIs, and frankly I don't know how he could even tell that, because large areas are overlapped with lesions, which aren't really countable anyway. He was also ignoring my reports of two relapses, one last spring and one that started this past winter, which by far was and is my worst. His idea is that these represent pseudo-exacerbations and thus not progression. Has his own definitions, obviously.t
Even in his perfunctory mini-examination of me he found new weakness on my left side, which I didn't know was there, as it's all been on the right. Lots more issues causing me doubt, but that's the general idea.
Anyway, in the course of a letter I wrote him I commented that it is my understanding that MS affects the gray matter as well as the white, though as yet there is no way of measuring or visualizing this. I told him I was very familiar with Tecfidera, am aware of side effects, etc., feel I should again be on a DMD, and Tec was my choice.
Since then I'd say things have gone better between us. Everything that can be done medically is being done. Yet I too have the feeling that parts are sort of slipping away. I've had to get real, or more real, with myself concerning what I can and cannot do. It's a good thing I'm retired because I couldn't possibly work. Maybe I could do the mental part
Recent examples of what I think you mean re: insidious progression: dish breakage is at an all-time high; I found my favourite coffee mug in the freezer; I couldn't remember my own address when I called for a cab; I actually had to go and look; I said "so nice to see you again" to someone I'd never met before; and, after recently having to fill out a form by hand, discovered that my once perfectly acceptable penmanship has deteriorated into a chicken scratch similar to my grandmother's handwriting after she had a stroke at age 75.
But worst is that I have little patience or energy for line ups and literally nearly had an anxiety attack at security at Heathrow recently when I had to stand and wait 45 mins for them to go through my carry on bag piece by piece, excruciatingly slowly. This was after the 9 hour flight and long trek through that mammoth airport. After standing so long and then overheating, I started to panic as vertigo set in, the room was moving around me and it felt like the floor was going to come up and smack me in the face. I took a small step and the floor felt unstable and lumpy under my feet. I was literally on the verge of tears through all of this, partly from exhaustion and heat, but mostly from the sense of vulnerability. My husband had stepped away to buy water and I figured by the time he was back I'd have hit the floor and I was horrified at the thought of being taken out of there on a stretcher. Husband showed up in the nick of time and basically had to hold me up on my feet as we looked for a place to sit. I was visibly vibrating and emotionally jarred, confidence totally shaken. I hoped to take a trip back that way this fall to visit a friend in London, but would be going on my own and right now I feel my confidence is too shot to follow through on a trip traveling solo.
But worst is that I have little patience or energy for line ups and literally nearly had an anxiety attack at security at Heathrow recently when I had to stand and wait 45 mins for them to go through my carry on bag piece by piece, excruciatingly slowly. This was after the 9 hour flight and long trek through that mammoth airport. After standing so long and then overheating, I started to panic as vertigo set in, the room was moving around me and it felt like the floor was going to come up and smack me in the face. I took a small step and the floor felt unstable and lumpy under my feet. I was literally on the verge of tears through all of this, partly from exhaustion and heat, but mostly from the sense of vulnerability. My husband had stepped away to buy water and I figured by the time he was back I'd have hit the floor and I was horrified at the thought of being taken out of there on a stretcher. Husband showed up in the nick of time and basically had to hold me up on my feet as we looked for a place to sit. I was visibly vibrating and emotionally jarred, confidence totally shaken. I hoped to take a trip back that way this fall to visit a friend in London, but would be going on my own and right now I feel my confidence is too shot to follow through on a trip traveling solo.
For my hubby, it's hard to know if it's his MS or is it the Addisons disease acting up? He's said that honestly he's more "fearful" of the Addisons. At least emergently. Basically because he gets so ill so fast. And knowing you can die if proper treatment is not carried out in a timely manner doesn't make for peace of mind.
Over the "long haul" the MS is scary. And the way he has really "gone downhill" this past year seems to have added to the fears of the future. He's a quiet guy, and such a non-complainer that I usually only know how he is from being married to him for 31+ years. I've told him I wish he would let me know how he's feeling, as my brain can build things up to be much worse than they really are.
I've also told him that if it was me who had Addisons I would probably be in a "crisis" all the time. Since stress compounds it, my worrying about having a "crisis" would bring one on. At least he and I try and keep a sense of humor about all of our medical issues.
C
Over the "long haul" the MS is scary. And the way he has really "gone downhill" this past year seems to have added to the fears of the future. He's a quiet guy, and such a non-complainer that I usually only know how he is from being married to him for 31+ years. I've told him I wish he would let me know how he's feeling, as my brain can build things up to be much worse than they really are.
I've also told him that if it was me who had Addisons I would probably be in a "crisis" all the time. Since stress compounds it, my worrying about having a "crisis" would bring one on. At least he and I try and keep a sense of humor about all of our medical issues.
C
JJ, that's exactly what my Neuro was saying in regards to MRI. He said we have had great advances in imaging but regardless this imaging is not always a reliable source. It won't pick up really small lesions or grey matter lesions at this stage.
I was surprised that he said I had moved during my last MRI & that some were not clear at all. I always thought I'm very still during my MRI's but I obviously need to be more mindful on this subject.
Karry.
I was surprised that he said I had moved during my last MRI & that some were not clear at all. I always thought I'm very still during my MRI's but I obviously need to be more mindful on this subject.
Karry.
COMMUNITY LEADER
A few years ago, i read an interesting international MS conference transcript on this topic, and what i came away with was basically that the experts know the MRI evidence of progression or stability, does not necessarily match the patient's physical evidence. MRI's are only capable of capturing part of the picture, but the patient's clinical signs (despite what the MRI's show) are more sensitive at capturing the more subtle changes of progression.
My measure is muscle strength, i actually mean the lack of muscle strength, which no matter what i do, or how hard i try, it's just progressively getting worse. LOL i still think in my head that i'm an athlete, so daft but still true and it's that life time of doing what i know and love to do, that keeps me trying to get out more than what my body is really capable of.
I'm still surprised how heavy my cup of coffee is at the end of the day, surprised at the amount of physical effort i have to put into lifting the kettle, when it's got more than a cup of water in it. I feel the strain, the muscles bracing, my stance needs to change to adapt for a heavy weight, and sometimes if i don't put my back into it, i still can't even get the kettle off it's stand.
I don't need any tests to know it's progressing, it's the familiar day to day things that are getting more noticeably harder, they alone simply tell me that my muscles are weaker than they were before.....
Cheers...........JJ
My measure is muscle strength, i actually mean the lack of muscle strength, which no matter what i do, or how hard i try, it's just progressively getting worse. LOL i still think in my head that i'm an athlete, so daft but still true and it's that life time of doing what i know and love to do, that keeps me trying to get out more than what my body is really capable of.
I'm still surprised how heavy my cup of coffee is at the end of the day, surprised at the amount of physical effort i have to put into lifting the kettle, when it's got more than a cup of water in it. I feel the strain, the muscles bracing, my stance needs to change to adapt for a heavy weight, and sometimes if i don't put my back into it, i still can't even get the kettle off it's stand.
I don't need any tests to know it's progressing, it's the familiar day to day things that are getting more noticeably harder, they alone simply tell me that my muscles are weaker than they were before.....
Cheers...........JJ
Excellent food for thought! I am awaiting the results from my first MRI since my dx over a year ago.
I am anticipating new spinal cord lesions due to 8 new symptoms since dx.
The insidious part for me (right now at least) is how far do I dare push myself?
Almost 3 months ago I started a new job in the hopes of reducing stress. My darned luck we have a huge international conference coming up in a few days. I will be away from home for 2 weeks and living in a hotel. I get lost on a good day, and may be required to take people around. We are a small group too, so we are expected to be available for anything 24/7.
A lot of walking, some events outdoors, remembering protcol for different types of dignitaries and no guarantee I can take my new meds at the right times and they require eating 30 minutes beforehand.
I don't want to say I am not able to do it, and I also don't know if it will be as bad as I am thinking but I cannot help thinking that my spasticity is changing and that it may be a sign of a dreaded relapse.
I keep thinking that I have been relapse free for a year despite the new symptoms, and maybe the new sx won't worsen.
The mind is a tricky beast for sure, we notice so many little things, but we have to be vigilant because we know that MRIs do not necessarily give us the whole picture.
Its a fine line, we shouldn't stress too much, but we are acutely aware that it is the little things that we notice that can be monumental to our future.
Sorry for the ramble, I seem to be all over the place this week. Darned heat and fatigue.
I am so happy for those who are doing well and I send hugs to those who need them.
Corrie
I am anticipating new spinal cord lesions due to 8 new symptoms since dx.
The insidious part for me (right now at least) is how far do I dare push myself?
Almost 3 months ago I started a new job in the hopes of reducing stress. My darned luck we have a huge international conference coming up in a few days. I will be away from home for 2 weeks and living in a hotel. I get lost on a good day, and may be required to take people around. We are a small group too, so we are expected to be available for anything 24/7.
A lot of walking, some events outdoors, remembering protcol for different types of dignitaries and no guarantee I can take my new meds at the right times and they require eating 30 minutes beforehand.
I don't want to say I am not able to do it, and I also don't know if it will be as bad as I am thinking but I cannot help thinking that my spasticity is changing and that it may be a sign of a dreaded relapse.
I keep thinking that I have been relapse free for a year despite the new symptoms, and maybe the new sx won't worsen.
The mind is a tricky beast for sure, we notice so many little things, but we have to be vigilant because we know that MRIs do not necessarily give us the whole picture.
Its a fine line, we shouldn't stress too much, but we are acutely aware that it is the little things that we notice that can be monumental to our future.
Sorry for the ramble, I seem to be all over the place this week. Darned heat and fatigue.
I am so happy for those who are doing well and I send hugs to those who need them.
Corrie
I have the fear of the MS having had it for over 40 years. I have a 87% chance of getting Breast Cancer. I have a greater chance at Colon Cancer. More so I have the Ovarian Cancer which could basically kill me anytime. I am in constant Chemotherapy. I have had to learn to not worry and enjoy the life I have left. It is not easy to take it one day at a time.
Alex
Alex
Kyle,
First off, I'm delighted you got such great test results. But, as you state, the insidious nature of MS can really play havoc with our perception of what is or isn't related, what is or isn't a worsening.
The stubbed toe method is about as good a test as any when imperical data is just not to hand. It can be a real mind-game, this chronic disease business. What I found helpful (my first year was really one long episode of hyper-vigilance that nearly drove me round the bend) was getting into the mindfulness meditation habit. It's not as hippy-dippy as it sounds, it just helps me to regroup and reset a little bit when the lack of control I have gets a little overwhelming.
And, like I said to JJ, thanks for chiming in on this topic. Even the most robust of us run face-first into certain inconvenient truths from time-to-time, and I appreciate both of your honesty around some of these trickier topics.
(For what it's worth, my 'new baseline' is pretty darn good, but is measured by changes I made subconsciously. Turns out there are handles on the doors of public transport. You don't notice them when you don't reach for them...)
First off, I'm delighted you got such great test results. But, as you state, the insidious nature of MS can really play havoc with our perception of what is or isn't related, what is or isn't a worsening.
The stubbed toe method is about as good a test as any when imperical data is just not to hand. It can be a real mind-game, this chronic disease business. What I found helpful (my first year was really one long episode of hyper-vigilance that nearly drove me round the bend) was getting into the mindfulness meditation habit. It's not as hippy-dippy as it sounds, it just helps me to regroup and reset a little bit when the lack of control I have gets a little overwhelming.
And, like I said to JJ, thanks for chiming in on this topic. Even the most robust of us run face-first into certain inconvenient truths from time-to-time, and I appreciate both of your honesty around some of these trickier topics.
(For what it's worth, my 'new baseline' is pretty darn good, but is measured by changes I made subconsciously. Turns out there are handles on the doors of public transport. You don't notice them when you don't reach for them...)
Hi Kyle,
As you are aware I'm on Rituximab and have been on it for nearly 6.5 years now. I have just seen my Neuro & he has not repeated a MRI as I had one done in March but he said that my MS is stable as well. He is not looking at me combining with any other DMD at this stage either which is all great news.
I am feeling like you though in that my balance doesn't improve any, my bladder is a hyper as ever as well as my ataxia & vertigo. So why do I feel that even though Rituximab is clearly lessening the disease activity on MRI I still feel that it's marching on.
My Neuro did say to me though that even though my MRI looks stable that doesn't mean MS is silent. I think he added this statement due to my enthusiasm at my condition being stable but also my confusion as to my ongoing struggles with symptoms.
I do wonder if this is just the nature of a progressive type MS occurring anyway in that the individual does notice a steady decline versus a relapsing remitting type pattern.
It's an interesting topic & I am certain many others will have their own opinions on this subject. I am very pleased to hear that the Rituximab is working at least on MRI for you. I know for me it took about 18 months until I was really reaping the benefits of Rituximab.
Take Care,
Karry.
As you are aware I'm on Rituximab and have been on it for nearly 6.5 years now. I have just seen my Neuro & he has not repeated a MRI as I had one done in March but he said that my MS is stable as well. He is not looking at me combining with any other DMD at this stage either which is all great news.
I am feeling like you though in that my balance doesn't improve any, my bladder is a hyper as ever as well as my ataxia & vertigo. So why do I feel that even though Rituximab is clearly lessening the disease activity on MRI I still feel that it's marching on.
My Neuro did say to me though that even though my MRI looks stable that doesn't mean MS is silent. I think he added this statement due to my enthusiasm at my condition being stable but also my confusion as to my ongoing struggles with symptoms.
I do wonder if this is just the nature of a progressive type MS occurring anyway in that the individual does notice a steady decline versus a relapsing remitting type pattern.
It's an interesting topic & I am certain many others will have their own opinions on this subject. I am very pleased to hear that the Rituximab is working at least on MRI for you. I know for me it took about 18 months until I was really reaping the benefits of Rituximab.
Take Care,
Karry.
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