Aa
L'hermitte's sign and the new unreliable me
Hi, please tell me that I'm not insane or depressed, it's just that I have MS?
I have just returned from a two day business trip and feel like I am THE biggest hypochondriac. The day before we left I started to limp again and then the fatigue set in big time. On the morning of the trip I awoke so tired, my legs weighed a ton and I had weakness in both legs and tremors in my left hand and an electric shock sensation in the hand when I attempted turning a seat knob in the car.
I was feeling wiped out so I said to my colleagues that I needed to have a sleep in the car for 30 minutes - first time disclosure of this need. Then when we arrived I said I had to have another sleep for 30 minutes or so which raised an eyebrow. At night we walked to a restaurant and my legs were cactus so separately two lovely colleagues assisted me to walk. Unfortunately, the restaurant they wanted to go to was closed so then we ended up walking about a kilometre or more, perhaps I'm exaggerating but I felt like I'd won a gold medal when we finally arrived for dinner.
I declined offers to go night clubbing and gambling so everyone else ended up going home at 10pm with me. Okay, so here is the problem: the next day I wake up after a great sleep and... all better! Well, I still have my normal MS symptoms that never go away of ms hug, numbness, tingling etc from chest to toes but I can walk again without limping and I felt good. It was a miracle. I should be so happy right?
Later in the afternoon at the conference I tilted my head down and for the first time experienced what I had only previously read about - L'hermitte's sign. It is a weird feeling of electricity that goes down my spine and into my left leg. That new sx has remained.
I consulted a colleague while trying to work the baffling sudden downturn then dramatic upturn in my symptoms plus add a completely new sx into the mix. She made me take a step back when she asked if I was having counselling. No, I responded confidently. I could if I thought I was depressed but I didn't think I was depressed. But I guess I may not know? My wife doesn't think I'm depressed but my short term memory isn't the best and I just can't remember the names of my children's friends at the moment.
I am having a lot of trouble trying to figure out the trigger to my downward spiral. In July, I went downhill and had a second attack in the lead up to a flying to visit my mother who lives interstate, and now I went downhill and probably had another attack in the lead up and during this trip. I didn't think I was stressed at all, in fact the business trip was for education and fun, no pressure.
MS research indicates that stress is not a factor but I am feeling stressed about the fact that I am not bleeding stressed or depressed or I just don't know what I am anymore!! I have been eating a vegetarian diet, taking my vitamins and being an alround good boy I thought.lol
It looks like I am the biggest attention seeking bozo and I just feel embarrassed that my leg weakness comes and goes every couple of days but this time it was nearly walker time again. I feel so out of control with my health: my sxs take a huge dive at the most inconvenient time! How will work ever be able to rely on me, how will I ever be able to rely on me?
You good, wise people. Please help me to make sense of all this. Sorry to ramble but no one else can possibly understand.
I have just returned from a two day business trip and feel like I am THE biggest hypochondriac. The day before we left I started to limp again and then the fatigue set in big time. On the morning of the trip I awoke so tired, my legs weighed a ton and I had weakness in both legs and tremors in my left hand and an electric shock sensation in the hand when I attempted turning a seat knob in the car.
I was feeling wiped out so I said to my colleagues that I needed to have a sleep in the car for 30 minutes - first time disclosure of this need. Then when we arrived I said I had to have another sleep for 30 minutes or so which raised an eyebrow. At night we walked to a restaurant and my legs were cactus so separately two lovely colleagues assisted me to walk. Unfortunately, the restaurant they wanted to go to was closed so then we ended up walking about a kilometre or more, perhaps I'm exaggerating but I felt like I'd won a gold medal when we finally arrived for dinner.
I declined offers to go night clubbing and gambling so everyone else ended up going home at 10pm with me. Okay, so here is the problem: the next day I wake up after a great sleep and... all better! Well, I still have my normal MS symptoms that never go away of ms hug, numbness, tingling etc from chest to toes but I can walk again without limping and I felt good. It was a miracle. I should be so happy right?
Later in the afternoon at the conference I tilted my head down and for the first time experienced what I had only previously read about - L'hermitte's sign. It is a weird feeling of electricity that goes down my spine and into my left leg. That new sx has remained.
I consulted a colleague while trying to work the baffling sudden downturn then dramatic upturn in my symptoms plus add a completely new sx into the mix. She made me take a step back when she asked if I was having counselling. No, I responded confidently. I could if I thought I was depressed but I didn't think I was depressed. But I guess I may not know? My wife doesn't think I'm depressed but my short term memory isn't the best and I just can't remember the names of my children's friends at the moment.
I am having a lot of trouble trying to figure out the trigger to my downward spiral. In July, I went downhill and had a second attack in the lead up to a flying to visit my mother who lives interstate, and now I went downhill and probably had another attack in the lead up and during this trip. I didn't think I was stressed at all, in fact the business trip was for education and fun, no pressure.
MS research indicates that stress is not a factor but I am feeling stressed about the fact that I am not bleeding stressed or depressed or I just don't know what I am anymore!! I have been eating a vegetarian diet, taking my vitamins and being an alround good boy I thought.lol
It looks like I am the biggest attention seeking bozo and I just feel embarrassed that my leg weakness comes and goes every couple of days but this time it was nearly walker time again. I feel so out of control with my health: my sxs take a huge dive at the most inconvenient time! How will work ever be able to rely on me, how will I ever be able to rely on me?
You good, wise people. Please help me to make sense of all this. Sorry to ramble but no one else can possibly understand.
You guys are the best. I am so relieved and overjoyed to read your comments and feel okay again with everything. A therapist probably would have bled $500 bucks out of me for all the advice and I am very grateful to you all.
Granny never a truer word was spoke about the level of support here! I like the fact that you have reached the point where people just accept the fact that you’ve had enough and don’t try to push you or make you feel bad for sitting out activities. It’s all new to me so thank you for the perspective.
JuJuminx, I laughed at the ‘checking’ of l'hermitte's sign because you know that is exactly what I have been doing up until reading your post but I will try to just leave it alone now. It is bizarre: why would you want to deliberately shock yourself, and every few minutes sometimes, but I guess it just another weird sx to get used to. Very true to hand it over to Him. It is liberating again to realise that I’m not in control. I’m going to buy a t-shirt ‘one day at a time’ because it always is so true. My day to today is great because I feel fantastic in comparison to a couple of days ago when I was 200% worse. But, in actual fact my overall sxs are now slightly worse than 5 days ago but at the moment I couldn’t care less. I liked an episode of Dr House years ago when he smashed a perfectly well body part to trick his mind into thinking his sick body part was okay. It’s all perspective really.
Super M, you crack me up – ‘winning a new cns’. I will definitely have to learn to pace myself. Yes, now that I think back there was always preparation to get out of the office and absolutely when you are at a new destination I’ve only realised that there is a heap of extra walking. The things we have to let go, oh well, still can have a laugh and a small glass of something now and then. The diet thing is quite easy for me and I don’t feel like I am craving anything probably because I take a handful of vitamins. I certainly not being absolutely strict eg last night our group agreed to stop at McDonalds for tea. Now I haven’t been to a store for years but I thought they did vegetarian but turns out they don’t. So I had a chicken burger and didn’t feel any guilt. Still think their food is crap though. This lady I met a few days ago said it took her 3 years on a vegan diet before her sx went away. 3 years?? That would be way too much pain for me and family to bear. I may as well jump off the bridge now. But that wouldn’t be wicked that would be stupid. So I guess as you say no rest, I’ll have to keep pluggin’ away and enjoying your company.
Bob, or are you really Obi Wan with medical cred for a light sabre? I really enjoyed reading your response which was so validating. Man, the invisible disability is here and now today. My boss just came in and said I looked great and yesterday I was walking great. And I said, you’re right I am great! No one wants to hear about your ‘silent’ sxs. I will try to learn from this and take more defined breaks and try not to worry about the rest of them. I have noticed everyone in the office saying how tired they are now and wanting to take a sleep. If only they really knew. Anyway, another 20 years or so of work for me so better make the most of it.
Pammy, this forum is a great relief value and talking about what we are going through really helps me. I guess we can only laugh or cry and sometimes and I do both. A famous actress was once asked about the difficulties of her profession to which she replied 'The most important things are to be able to laugh and cry. If I have to cry, I think of my sex life. And if I have to laugh,well, I think of my sex life.'
Barb, thank you for the hugs I can feel the love all the way around the world! Yes, a wacky ride getting used to the new sxs but I hear you, it is not linear.
Okay, hugs, kisses to all. I must get back to work
Blessings
Alex
Granny never a truer word was spoke about the level of support here! I like the fact that you have reached the point where people just accept the fact that you’ve had enough and don’t try to push you or make you feel bad for sitting out activities. It’s all new to me so thank you for the perspective.
JuJuminx, I laughed at the ‘checking’ of l'hermitte's sign because you know that is exactly what I have been doing up until reading your post but I will try to just leave it alone now. It is bizarre: why would you want to deliberately shock yourself, and every few minutes sometimes, but I guess it just another weird sx to get used to. Very true to hand it over to Him. It is liberating again to realise that I’m not in control. I’m going to buy a t-shirt ‘one day at a time’ because it always is so true. My day to today is great because I feel fantastic in comparison to a couple of days ago when I was 200% worse. But, in actual fact my overall sxs are now slightly worse than 5 days ago but at the moment I couldn’t care less. I liked an episode of Dr House years ago when he smashed a perfectly well body part to trick his mind into thinking his sick body part was okay. It’s all perspective really.
Super M, you crack me up – ‘winning a new cns’. I will definitely have to learn to pace myself. Yes, now that I think back there was always preparation to get out of the office and absolutely when you are at a new destination I’ve only realised that there is a heap of extra walking. The things we have to let go, oh well, still can have a laugh and a small glass of something now and then. The diet thing is quite easy for me and I don’t feel like I am craving anything probably because I take a handful of vitamins. I certainly not being absolutely strict eg last night our group agreed to stop at McDonalds for tea. Now I haven’t been to a store for years but I thought they did vegetarian but turns out they don’t. So I had a chicken burger and didn’t feel any guilt. Still think their food is crap though. This lady I met a few days ago said it took her 3 years on a vegan diet before her sx went away. 3 years?? That would be way too much pain for me and family to bear. I may as well jump off the bridge now. But that wouldn’t be wicked that would be stupid. So I guess as you say no rest, I’ll have to keep pluggin’ away and enjoying your company.
Bob, or are you really Obi Wan with medical cred for a light sabre? I really enjoyed reading your response which was so validating. Man, the invisible disability is here and now today. My boss just came in and said I looked great and yesterday I was walking great. And I said, you’re right I am great! No one wants to hear about your ‘silent’ sxs. I will try to learn from this and take more defined breaks and try not to worry about the rest of them. I have noticed everyone in the office saying how tired they are now and wanting to take a sleep. If only they really knew. Anyway, another 20 years or so of work for me so better make the most of it.
Pammy, this forum is a great relief value and talking about what we are going through really helps me. I guess we can only laugh or cry and sometimes and I do both. A famous actress was once asked about the difficulties of her profession to which she replied 'The most important things are to be able to laugh and cry. If I have to cry, I think of my sex life. And if I have to laugh,well, I think of my sex life.'
Barb, thank you for the hugs I can feel the love all the way around the world! Yes, a wacky ride getting used to the new sxs but I hear you, it is not linear.
Okay, hugs, kisses to all. I must get back to work
Blessings
Alex
I just wanted to send you big hugs and say a prayer for you. You aren't losing your mind...and if you are, you are in good company with us. I'm kidding. Well.... :)
I am currently disregarding any new symptoms. That's what I'm trying to do at least but I am still taking note of vision symptoms, hearing fluctuations, hearing fluttering, balance issues and some sluggishnish in my, ohhhh, nearly every body part including my mind.
One day, I think I'm depressed then I physically start to feel better a bit later and I think "I feel good." I am losing things, forgetting stuff and generally think I'm in fantasyland most of the time. Nope, this path is not linear... my goal is to learn to ride the wave...I'm not there yet. No balance. Hmph! ;)
Hugs and blessings,
~Barb
I am currently disregarding any new symptoms. That's what I'm trying to do at least but I am still taking note of vision symptoms, hearing fluctuations, hearing fluttering, balance issues and some sluggishnish in my, ohhhh, nearly every body part including my mind.
One day, I think I'm depressed then I physically start to feel better a bit later and I think "I feel good." I am losing things, forgetting stuff and generally think I'm in fantasyland most of the time. Nope, this path is not linear... my goal is to learn to ride the wave...I'm not there yet. No balance. Hmph! ;)
Hugs and blessings,
~Barb
Alex,, I understand, and I am not even diagnosed with ms. I have felt the same way that you are feeling. There are times that I feel like , oh my, I feel so depressed about my life, my health, how much my world has changed since being sick, but then when I am faced with certain questions or challenges, I will crack a joke about myself and laugh it off rather than cry.
Sometimes I try not to talk too much about my "health issues" because for some reason when someone is not going through what you are, they tend to roll their eyes, but the symptoms you feel daily makes you want to talk about it, right? I know I do. I need to talk, I need to let people know the kind of day I am having. If I don't, then to them I must be fine.
Not feeling well, will be the first thing on your mind daily,,,,
It is with me.
You are not crazy, you can tell us everything you are feeling every single day if it helps.
Talking about it with others will ease your burden of it!
Always here to listen,
Pam
Sometimes I try not to talk too much about my "health issues" because for some reason when someone is not going through what you are, they tend to roll their eyes, but the symptoms you feel daily makes you want to talk about it, right? I know I do. I need to talk, I need to let people know the kind of day I am having. If I don't, then to them I must be fine.
Not feeling well, will be the first thing on your mind daily,,,,
It is with me.
You are not crazy, you can tell us everything you are feeling every single day if it helps.
Talking about it with others will ease your burden of it!
Always here to listen,
Pam
One thing I have learned over the years is that stress in even the least form will exacerbate my symptoms... When I know I have to go somewhere that is going to require all of my energy mentally and physically I get worse every time... Yes, it makes me feel like a hypochondriac...
I stress over the actual situation and then I stress over what others are going to think... I will also stress over the fact that I'm stressing over every thing... haha Make sense of that if you will... It's like a never ending ordeal with this MonSter of a disease we have...
Maybe this is what is going on with you too... We all know that stress is in the top 5 reasons for our symptoms getting worse... What I try to do is take a deep breath and tell myself what ever happens happens... I can't control it so I just go with it.
If I am feeling bad when it's time to leave then I don't go... If I get there then start feeling bad I just stop and say I'll stay here and you can grab me on your way back through... I guess you could say I give into my MS but why make everyone else miserable just because you are?
My family has learned to deal with this pretty well... They don't get upset with me any more when I say I've had enough... They know if I feel like it I'll lead the pack but they also know if I don't feel like it just let me be... It's a hard life sometimes but we have to do what's best for us...
Take care of yourself and let the wonderful people here help you with the best support I've ever had in my life... To me this forum is better than any Therapist and a whole lot cheaper too...lol
I'll be praying,
Carol
I stress over the actual situation and then I stress over what others are going to think... I will also stress over the fact that I'm stressing over every thing... haha Make sense of that if you will... It's like a never ending ordeal with this MonSter of a disease we have...
Maybe this is what is going on with you too... We all know that stress is in the top 5 reasons for our symptoms getting worse... What I try to do is take a deep breath and tell myself what ever happens happens... I can't control it so I just go with it.
If I am feeling bad when it's time to leave then I don't go... If I get there then start feeling bad I just stop and say I'll stay here and you can grab me on your way back through... I guess you could say I give into my MS but why make everyone else miserable just because you are?
My family has learned to deal with this pretty well... They don't get upset with me any more when I say I've had enough... They know if I feel like it I'll lead the pack but they also know if I don't feel like it just let me be... It's a hard life sometimes but we have to do what's best for us...
Take care of yourself and let the wonderful people here help you with the best support I've ever had in my life... To me this forum is better than any Therapist and a whole lot cheaper too...lol
I'll be praying,
Carol
Oh goodness. You are having a time of it aren't you? I am so sorry. We can all relate on some level, I know I definately can.
The hardest part for me is realizing that I don't have any control over my MS. Yes, I can eat well, exercise, get the sleep I need and TRY and keep my stress levels down but life happens and my MS doesn't ask me if now is a good time to flare up.
MS does what it wants and we are scrambling to keep things from falling apart b/c of it. The reality is that you could have been the best boy ever and you MS will flare up and knock you down.
I travel but only for pleasure and only on relatively short trips, and even then it takes a toll on me. Whether we see realize it or not, travel is stressful on the body...time changed, diet changes, sleep changes, air pressure changes, etc. Add to that the energy it takes to try and appear normal to the people around you, and it's exhausting.
In spite of not currently having sx, MS effects my everyday life all the time. I don't go to outside events in the summer anymore. I live in a town that lives on sports...baseball, football, soccer, etc. No way will I go to any of these when the temp is over 85 degrees. In small amounts I am fine but for 3-4 hrs? No way.
As for you new sx of the l'hermitte's sign, try very, very hard to avoid "checking" to see if it's still there by tilting your head and making it shock you. Even after my dx and steroids, my sx got worst before they got better. Sometimes they just need to run their course before subsiding.
Since it is a new sx though I would make sure to let you dr know and see what he/she suggests. Maybe you are in a relapse.
And as far as the future...wow, that is a big one that we are all facing. Talk about not being in control! All you can really focus on is the present. If you focus too much on the possiblities of where this could take you work-wise, you will very quickly feel overwhelmed and your mind will take you places that you don't want to go. Take it a step at a time, a day at a time.
Hand it over to God. Only He knows how this is going to all end and I have found He has quite a sense of humor. It helps me if I sometimes laugh at my humanness (is that a word?) and am so shockingly reminded that I am not the one in charge.
Hang in there, we are with you.
Julie
The hardest part for me is realizing that I don't have any control over my MS. Yes, I can eat well, exercise, get the sleep I need and TRY and keep my stress levels down but life happens and my MS doesn't ask me if now is a good time to flare up.
MS does what it wants and we are scrambling to keep things from falling apart b/c of it. The reality is that you could have been the best boy ever and you MS will flare up and knock you down.
I travel but only for pleasure and only on relatively short trips, and even then it takes a toll on me. Whether we see realize it or not, travel is stressful on the body...time changed, diet changes, sleep changes, air pressure changes, etc. Add to that the energy it takes to try and appear normal to the people around you, and it's exhausting.
In spite of not currently having sx, MS effects my everyday life all the time. I don't go to outside events in the summer anymore. I live in a town that lives on sports...baseball, football, soccer, etc. No way will I go to any of these when the temp is over 85 degrees. In small amounts I am fine but for 3-4 hrs? No way.
As for you new sx of the l'hermitte's sign, try very, very hard to avoid "checking" to see if it's still there by tilting your head and making it shock you. Even after my dx and steroids, my sx got worst before they got better. Sometimes they just need to run their course before subsiding.
Since it is a new sx though I would make sure to let you dr know and see what he/she suggests. Maybe you are in a relapse.
And as far as the future...wow, that is a big one that we are all facing. Talk about not being in control! All you can really focus on is the present. If you focus too much on the possiblities of where this could take you work-wise, you will very quickly feel overwhelmed and your mind will take you places that you don't want to go. Take it a step at a time, a day at a time.
Hand it over to God. Only He knows how this is going to all end and I have found He has quite a sense of humor. It helps me if I sometimes laugh at my humanness (is that a word?) and am so shockingly reminded that I am not the one in charge.
Hang in there, we are with you.
Julie
COMMUNITY LEADER
okay I'll play along with your game of "am I crazy and just haven't realised it yet?" and i'm going to pick, no! do i win a new CNS???? lol seriously i dont think your depressed or ready for the funny farm just yet, but you'll get there a lot sooner if you stress about not being stressed etc etc sort of a circular existance.
What i think is going on is related to fatigue, you have a million things to organise before you set off on a trip, holiday or work doesn't really make much difference, its the same basic principal. Pushing your self a bit more than usual because of the time restriction and then the traveling takes what ever you had left out of you and then bingo temperary sx give you a big wack to remind you that MS can't be ignored.
Remember there's a lot more walking etc than you'd usually be doing than in your usual day at the office, it all eventually adds up and you pay the MS toll until you replenish your energy supplies again. If being a vegitarian is new to you, its not uncommon to not be eating enough energy enriching foods and thats not going to be helping either (my brother, a vegitarian for almost 40 years) it might be better to follow the concept under the guidance of a neutricianist (sp) just in case. :-)
I think this is one of the hardest things to work out, how to pace your self but it can be done if you remember to rest even before you feel the need too, just try it and i'm sure you'll find your balance!
Cheers.........JJ
PS theres no rest for the wicked lol
What i think is going on is related to fatigue, you have a million things to organise before you set off on a trip, holiday or work doesn't really make much difference, its the same basic principal. Pushing your self a bit more than usual because of the time restriction and then the traveling takes what ever you had left out of you and then bingo temperary sx give you a big wack to remind you that MS can't be ignored.
Remember there's a lot more walking etc than you'd usually be doing than in your usual day at the office, it all eventually adds up and you pay the MS toll until you replenish your energy supplies again. If being a vegitarian is new to you, its not uncommon to not be eating enough energy enriching foods and thats not going to be helping either (my brother, a vegitarian for almost 40 years) it might be better to follow the concept under the guidance of a neutricianist (sp) just in case. :-)
I think this is one of the hardest things to work out, how to pace your self but it can be done if you remember to rest even before you feel the need too, just try it and i'm sure you'll find your balance!
Cheers.........JJ
PS theres no rest for the wicked lol
I travel a bit since I work in IT. I'm also a few years older than you. All I can tell you is that I take frequent breaks during the day. I found it much easier when I started to walk with a cane at remote locations. It is a "visual cue" to folks that I may have other needs. Sometimes, it can be tough for others to process the idea of invisible disabilities.
I will also say that MS is depressing. It should be. I have a tendency to think that we don't want to acknowledge those periods of "normal" depression. Face it, this disease s_cks. It limits what we do and when we can do it. It steals some of the experiences we should be having with our families. It sneaks up on us and smacks us with a relapse without warning, when we least expect it. It usually does it when we already have plans.
Talk therapy (here or with a professional) helps. So can medications. Our brains are broken, so why shouldn't we consider that serotonin/dopamine production and/or uptake might be effected. It took a bit of time to wrap my head around it, but I need to stay in the work force for another 15 years or so, so I'll take what help I can get.
Bob
I will also say that MS is depressing. It should be. I have a tendency to think that we don't want to acknowledge those periods of "normal" depression. Face it, this disease s_cks. It limits what we do and when we can do it. It steals some of the experiences we should be having with our families. It sneaks up on us and smacks us with a relapse without warning, when we least expect it. It usually does it when we already have plans.
Talk therapy (here or with a professional) helps. So can medications. Our brains are broken, so why shouldn't we consider that serotonin/dopamine production and/or uptake might be effected. It took a bit of time to wrap my head around it, but I need to stay in the work force for another 15 years or so, so I'll take what help I can get.
Bob
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
