View Full Version : The Ongoing Pain Question?
kevinw
05-09-2008, 01:28 PM
I think I probably know there is no good answer to these questions, but I have read a lot of threads regarding MND and pain. I recall reading in some the threads that the feeling of pain has nothing to do with any motor nueron condition. Now, I might just be missing something but how can someone have extremely stiff or fatigued muscles and not have pain and pulled muscles by the end of the work day?
Which brings me to the next even harder question of, when can one tell when it's just too much? I mean, when you try to make work as comfortable as possible but your legs are so exhausted and sore by the end of the day you are just recovering for the next day. It's a fine line of work ethics & obligation "verses" comfort & quaility of life outside of work.
Oh well, I've rambled on enough.....it's just one of things of trying to sort it all out. :-?
It's funny. They say that there is no pain associated with ALS and PLS, but my mom experiences alot of pain. Her legs and joints are in constant pain. I think the pain is actually different than the fatigue pain you describe because it's there even in the morning.
When doing some web searches, I was able to find pain as a symptom of PLS and it is due mainly to spasms I guess.
As what can be done about it, I really don't know. If you ask the neuros, they'll tell you it doesn't exist because it's not part of the disease. It's a no win situation.
kevinw
05-09-2008, 03:31 PM
yea...i guess it is a "no win situation".....my neuro was at least compassionate about the pain and explained it to my wife and i as the feeling of walking in water or molasses all day and pulling muscles (she also increased my zanaflex and the pt said to keep doing the stretches). i guess it's just hard for me to get my mind around the thought that you could have all these problems with the muscles, still try to have a normal day, and not expect to have pain from it. :confused: i get a lot of my pain in my upper legs (the front and back).....and it feels like it's from strained/pulled muscles, but by the end of the day they feel like they could just "buckle" from under me.
enough to drive you crazy trying to figure out a pattern.......:-D
Kevin if you continue to work you may Buckle under and fall at some point . Get real and face reality that if you have PLS you'll eventually have to quit or they'll fire you like Happened to me . Of course they Have to take you back But at drastically reduced hours . Some do have Pain with PLS Some dont .Dont let your doc. tell what he hasnt got a clue on . Because he hasnt got a clue why we have what we have ,it defies all logic
All the Diagnostics says we should be fine . Evidently you havent had it a long time . Geo
Whitsend
05-09-2008, 05:51 PM
I don't have pain per se. As long as I sit at my computer and do nothing all day, I'm okay. Most of the pain I experience comes in bed at night when the cramps/spasms start. Sometimes I can get through them by stretching, but sometimes they're in a place I can't stretch. Like lately I've been getting them on the outside of my leg beginning at the ankle and going up. Then my husband applies some Ben Gay and it helps a lot.
What I experience most (if not just sitting around doing nothing) is pure and utter exhaustion. My legs are stiff as boards and I just fatigue very quickly when every fiber of my being is just trying doing everything possible to keep my balance.
The pain I've got at this very moment is my feet are absolutely killing me. Been doing laundry today and I can only stand for a few minutes folding clothes as my feet are just screaming out in pain. But I don't think that has anything to do with the PLS.:-?
sadly pain is a issue for most people with pls. this is caused by 2 reasons.
firstly muscle spasms and muscle fatigue from over working the already damaged muscles. someone here said if they sat and did nothing all day they would not be in as much pain,this is the same for me and i would call this pain muscle fatigue due to my weak muscles. i am however one of those people who can not sit about doing nothing so i am my worst enemy lol. spasms are different, sometimes i am so crippled i can not walk and my mum will say what have i been doing, i say nothing . with spasms/pain no amount of rest helps, only my baclofen can keep the pain/spasm under control.if the spasms are bad in my groin i have to go to the toilet more as they effect the bladder.
also like you my legs feel heavy and it feels like you are trying to walk through water, its like when you try to move your legs theres an invisiable force field forcing them back.
when working causes a deterioration in your health and home life it is time to stop, it is hard but gives you a better quality of life.
take good care
caroline:-D
kevinw
05-12-2008, 07:54 AM
Hello everybody...I hope everyone had a nice weekend. I wanted to thank everyone for their replies. I think I started this tread because I could not sort all these thoughts and running thru my mind and it's nice to hear input (or confirmation).
Geo: I completely understand the "buckle" feeling, I get this feeling a lot in the morning and evening. It almost feels like trying to walk like the scarecrow in the Wizard of Oz :). Strange to have something feel so tight & tense, yet buckle under you. One good thing I have going for me is my ALS specialist is very much on my side and she stated she would support anything I wanted to do and to just call her with any problems or questions. As far as having it for a long time, I can only really go back about a year & a half. Even with my walking & tripping problems last year I never, never remember the aching/pulled muscle pain I have every evening now.
Whitsend: You sound like a mirror image of my day (except the feet thing) :). As I sit here at my desk on a Monday I feel no pain in my legs, on tense muscles while sitting and what I guess I'll call "woobly" walking? My main problem with pain comes in the evening while watching tv or trying to get to sleep. That's when the aching pain, cramps, and spasms drive me crazy (I am on zanaflex in the morning & at night, but a low dose at this point that is slowly being increased).
olly: LOL...."overworking & worst enemy". I understand 100% it is very hard to stay within my limitations. First of all I don't even think I know what my limitations are yet, but I sure do know when I have exceeded them.
I hope everyone is doing well. I am sure there are other "more fun" forums we want to be in rather than searching for answers here, but I thank everyone for sharing ideas and info.
Kevin Beleive it or not ,this place is a Gold mine .It first gives those who have this affliction a place to come when you feel alone and getting no answers from the prfessionals who should be helping . If those who come here share their thaughts at least thats a start . then we go from there to what we have in common as far as the disease we have . The real shame is those who come here and only take and do not share . Many years ago i belonged to a group that some only rip apart what others try to help . This is not support ,rather negativity . Im here to try and help ,maybe not alot some times ,but i'll try to help those who want it . God Bless Geo
You sound alot like myself at one point . Keep the Doc. Sounds like a compassionate person .Geo
i completely agree with geo. i too used to post on the forum he mentioned but this one is by far the best. if you look back in the threads we have exchanged lots of info, had some really good chats. we need to get this pls forum back to full swing.
i must admit i have not been posting much lately due to illness,personal, family problems. but will try to post more ofton again.
take care.
caroline:-D
kevinw
05-13-2008, 07:35 AM
Geo, trust me when I say that your past threads are very, very helpful. This place really seems like a gold mine for information and a place to visit to help put some reality to what is going on in our bodies. I have only found one other forum that I was not very impressed with, and it was after I found this one (something just seems comfortable about this one). Ohhh, and to hear that I may sound like you at one point is a very good thing, because when you feel like your lost in the middle of the scale between "normal & worst case" it's nice to know that I might be able to continue and be active and productive. Again your insights and comments are more valuable to others than you may think.
Olly, I am so sorry to hear that you have all those issues going on at home. I hope things are getting better each day. On another note, I do agree that this forum is most likely the best there is. I look forward to each day checking the new messages. Well I guess I've gone on long enough, again I hope you are doing well.
CindyM
05-13-2008, 12:58 PM
Hi Kevin. Thanks for the vote of confidence. We do have a special place here, don't you think?
lost in the middle of the scale between "normal & worst case" Your statement is so on-target! You've got a great way with words! :-D
kevinw
05-13-2008, 02:21 PM
Thank you CindyM, and from my point of view you also have a way with words. Your posts in all the "sub-groups" that I've read are always so compassionate and calming. Although I seem to always post in the PLS group I do keep up with the other threads and your insight is something to admire.
Thanks all your insight.
In keeping with the thread on pain, were anyone's visible symptoms (i.e. tripping or falling etc) preceeded by pain?
My mom had pain for about 4-6 months in both her knees before she had difficulty with the stairs. And she had pain in both her legs about 4-6 months before she started noticing them stiff and had abnormal gait.
kevinw
05-14-2008, 08:44 AM
sral......I would have to say that my balance and tripping started first throughout last year. Also, the way I walked seemed to change throughout the year (scuffing my left foot as I walked). Something I remember is my wife saying I was walking with "heavy feet". But what was happening was my feet were like flopping as I stepped and it made a "flopping/slapping" noise when they landed. My left foot would also feel like it was getting stuck behind me when it was it's turn to step forward. Then in the fall/winter I started having cramping & pulled muscle pain (but very mild). Now it seems the aching pain is every evening after a full day. Also, I am noticing more often a "bouncing" feeling when I come to a stop.
I guess what I am saying is that "everything in my legs seemed to stop working like it should in one motion", it felt like I was becoming disconnect with my lower body and they just did what they wanted when I was walking.
Hope this helps (a little), but mine didn't start with pain, just the feeling like I was becoming uncoordinated. :?
Thanks Kevin.
Did you experience any stiffness?
kevinw
05-14-2008, 01:34 PM
Yes.....I have had extreme stiffness in my legs since the last few months of last year. Sometimes it feels like walking with casts on both legs. They still get stiff at different times during the day, but the warm weather seems to help more.
thanks Kevin.
You did not mention stiffness as a symptom. Did you only get cramps and spasms or stiffness too?
Initially for my mom, I first noticed the stiffness in moments of panic. I remember when my daughter was about to fall off her bike and my mom was in a panic to run to her rescue she completely locked up and although the movement at that time was still swift she looked stiff as a board. As time progressed, stiffness was more apparent in her movements
Whitsend
05-14-2008, 03:17 PM
sral....
No pain. However, I did have a stiffness in my hips. Really 'groaned' when I went to get out of a chair. Then the tripping/dragging of my left foot began.
Kevin,
Sorry for the second message on stiffness. I thought the first one never got posted.
By the way, did you get a diagnosis yet? Since my mom's symptoms only began just over 2 years ago, the diagnosis is upper motor neuron disease. At the 3 year point, the neuro said that if the EMG is still negative, then a PLS diagnosis would be made. We're praying!
Whitsend,
Thanks for your reply. Stiffness is apparently a common symptom of PLS. My mom said the stiffness isn't as bad anymore. I hope that this doesn't mean anything bad.
Whitsend
05-14-2008, 03:23 PM
sral...
Just saw your last reply. I am now stiff everywhere from the waist down. I look like the tin man trying to walk, turn or bend over. And yes, I had those moments of panic when everything locked up. If I couldn't catch myself, I just tipped over. I remember one time in particular. I had just parked my car in the parking garage at work. There was an especially bad thunderstorm going on. I had just got out of my car when a horrendous clap of thunder sounded and scared the *ell out of me. My knees went to rubber and the rest of my body just locked up. Sounds like what your mom is going through.
kevinw
05-14-2008, 03:27 PM
Ahhhh....the hard part....explaining the symptoms (this is what makes my wife mad at me when I try to explain her how I feel). But to answer your question, I would say up to 3 months ago it was only stiffness in my legs. Now it's stiffness, aching/cramping pain when resting, and minor/mild spasms when resting (I don't want to make a big deal over the spasms, they are more annoying than anything else, it just seems like the muscle can't get comfortable and find it's spot, it just rolls around in there).
Thanks Whitsend.
When did your first symptom happen? What limb was affected?
It's only been two years for my mom. She started lithium in January and the stiffness seems to be less, although she is more fatigued
kevinw
05-14-2008, 05:02 PM
sral.....my dx is PLS at this point. My local doctor had sent me to my first neuro, who ran all the original bloodwork & other tests. He seemed to an idea that something was going wrong with the nerves and muscles, but never really commited to any MND diagnosis. So he was very confident that he should referred me to an ALS specialist in the Philly area. He never really said it (and he was very nice about it), but he gave the impression that maybe the specialist could better service my needs, they had worked togeather in the past. So I went there, re-did most of the test to confirm they were okay, and she agreed with my original neuro of the PLS symptoms and now it's just a waiting game for what next few years might bring (like Geo would say "limbo land"). :-D
Kevin,
Are you like my mom who has not had symptoms for 3 years yet?
By the way, have you lost any muscle tone in your legs?
I thank you all for your kindness in sharing your experiences. It helps!
kevinw
05-14-2008, 05:35 PM
No need to thank me at all....I'm just the same as you searching for information to either make sense of this or put down another road of a diagnosis that maybe got overlooked, but is right in front of me.
Anyway, yes I am just like your Mom, still within that 3 year window. My problems are 95% lower body with just minor problems with my left hand (stiff fingers, no pain, it just seems like they don't wiggle anymore).
I don't think I lost any muscle tone at all. I used to ride bike years ago, but never had really great tone to start with (to quote my wife I have chicken legs anyway). :-D
MtPockets
05-14-2008, 06:42 PM
I enjoy reading all your comments. I had foot drop for awhile before the legs began the fasciculations, and the cramps with the pain. After about a year and a half of this I was finally DX with ALS, but by that time I had lost most the use of my legs and was in a wheelchair full time.
I know it is terrible being in the limbo land without a DX. I feel for you all and wish you the best.
Captain Al,
I'm sorry to hear of your eventual diagnosis. Did your leg problems start all over in a particular part of your leg, i.e. thigh or calf?
My mom does not always describe the pain as cramping. Sometimes she says it's just pain.
MtPockets
05-14-2008, 08:21 PM
They said I had limb onset ALS. It started in my feet. My feet would cramp and I would have to pull my toes back to relieve the cramps. It eventually, slowly moved up the legs, until now I have no use of my legs. Current symptoms are in my torso, arms, and upper body. It has taken about 4 years to move that far with me. At least mine has been slow progression.
Capt Al,
My mom says that she needs to curl her toes upwards when lying in bed sometimes because the spasms in her legs are so bad. This in itself was not cause for an ALS diagnosis. A clear EMG made they diagnose her with upper motor neuron disease. They said that up until the 3 year point they could not call it ALS. She has lost some muscle tone on her calves, but I don't know if that is from disuse or disease. She can still walk but it's a waddle type walk. I'm praying that the diagnosis does not change.
Kevin,
Your symptoms seem very typical of PLS and not ALS. You are very fortunate! Although time will only tell, you seem classic PLS.
I'm not too familiar with clonus. Does clonus happen on it's own or only when you flex the foot or leg or hand in a certain way? When my mom was first diagnosed she showed clonus on her right foot but it was apparent only when the doctor flexed her foot. She has not seen anything happen on it's own so far.
As for babinski sign, what happens to the limb with this? What would it look like? I don't think my mom has this.
kevinw
05-15-2008, 07:44 AM
Capt Al...my legs seem on the same path yours were. The last time I was at the clinic they gave something for my left foot. It is not one of the full plastic braces, it's just a velco band that goes around ankle. Then two laces that tie in the front holes of my shoes (towards my toes). Then I cross them over and pull the foot up and wrap the two velco straps about the ankle band. Seems like something so simple and it helps a lot, when I'm walking and my left foot is coming forward it doesn't let the front of my foot drop too soon.
sral....I would have to say the clonus only happens when my foot/ankle is flexed (I think)? Yea, the more I think about it, it is always when there is pressure on the foot and 99% of the time the ankle is (or just was) in some form of movement (if that makes sense).
kevinw
you sound just like me with the left foot slapping. your descriptions of symptoms are very good but like your wife for someone else its hard to understand what mnd symptoms are like.even neuro's dont fully understand lol,but we can try in vain to explain.
sral
i have had pls for 9yrs now. i do have hypotonicity/flaccidity=loss of muscle tone/contraction. this is lmn and i have it in my left lower leg.you can not see this loss of muscle tone as it is a neurological manifestation and not the same as someone not having toned muscles but is loss of a muscles natural ability to contract so it does'nt reach its full potential.
some small lmn involvement is common in pls. however they do say in pure pls there should be none and if there is small amount it is umn dominant als. but on autopsy there is lmn involvement evident in pls.
i have clonus. if my arms or legs are in a certain position they have like a uncontrolable tremor.i have focal reflex clonus in my right leg were my leg can suddenly shoot up in the air( if this happens when your standing it's a bummer). also my arms or right side of my body can twitch. abnormal movements are common in mnd.
god bless you both.
caroline:-D
Caroline/OLLY,
God Bless You ... 9 years and counting!
How did your first leg symptoms start? Was there any weakness in the beginning when your legs stopped moving like they use to?
My mom is walking much slower, has difficulty with the stairs and seems to have abit of a waddling gait (wide stance and seems to move slightly side to side).
By the way, thanks for describing what loss of muscle tone means. I had never heard it explained as an inability to flex (makes sense)
i began with painfull muscle spasms and stiffness in the legs for this first 4mths, then weakness in the left lower leg/foot,dragging it along.then fasicc's and abnormal movements/clonus. i have developed progressive limb girdle muscle weakness,hip/shoulder girdle weak over the years. the pls has slowly worked up my body to my bulbar muscles now so i have problems chewing/swallowing/slurred speach when tired and spasms/clonus in my right side of face.
other than all this and my body falling apart i am doing well lol:)
like your mum i tend to have a waddling gait due to the hip girdle weakness but if the spasms /stiffness in my legs is bad it can go spastic. apparently this alternation from stiff/spastic to flaccid/weakness is normal.
god bless you and your mum.
caroline:-D
Caroline,
Your nine years into it and you can still walk, eat, talk even if not as good as before ... so this is GREAT.
My mom's first signs were bulbar. Her speech was very slow. About 9 months later her knees started to bother her and the stairs was painful. About 9 months after that her legs started getting pain and were stiff. Now about 2.5 years later, she can still walk without a cane (slow and not very steady), she can still talk (very slow and slurred at times), she can still swallow and eat.
Basically she can't go far distances walking and she can't eat really fast. She does not have much stiffness anymore. She does not have clonus happening on it's own or babinski. Her calves look much smaller than before. And one of the biggest issues is fatigue and pain. Her pain moves and isn't in the same spot all the time. It is typically in joints and limbs.
I really don't know what to think anymore. Sometimes I question whether her diagnosis is correct.
I'm starting to doubt that it is PLS because she does not look stiff anymore.
I'm not sure if it is ALS because she has alot of pain and her symptoms are on both sides at once (with ALS it is typically first on one side then on the other).
Also, with ALS pain is not usually the first symptom when affecting a limb.
I don't think a waddling gait is an ALS sign either.
Who knows anymore!
no pls or als patient are the same as the next. some progress slower or quicker in either one. i know some pls'ers who have had it over 20yrs and are no longer as stiff as they first were but i think that is years of meds.
if you are worried or have doubts as to your mums dx get another opinion. if shes under 5yrs of symptoms and there are getting worse get a emg done.
i do hope her symptoms settle down/plateau that will be a good sign, mine did this after over 2yrs, slow for 5 then slowly sped up again past 2yrs but i'm hoping things will calm down again.
god bless
caroline:)
Thanks Caroline.
My mom's symptoms really have not sped up much in the past 6 months. However, the only real change is the size of her calves. The pain has been there since the beginning. As each day passes, the stairs become more difficult. Some days she can hang on and walk up slowly and other days she literally needs the strenght of her arms to pull her up each step. That's the interesting part of it. She actually has good and bad days. Her good days are never as she once was though. There are times when she pronounces every syllable and moments when it's more slurred. Days when she can barely move her legs (from pain) and days when she moves freely although slower.
Do you experience good and bad days or is each day worse? Can yo still do stairs? When did they become difficult for you?
Thanks for all your support by sharing.
kevinw
05-15-2008, 12:08 PM
sral....If I can hop in here, I can say that I have some better days than others (might have to do with work load or weather). As far as stairs for me, I can still step up them pretty good, although slower than I used to be able to. My main problem with stairs is my balance coming down them, it feels like I can't trust my feet, ankles, and legs (every step feels like it could be an "off balance" fall forward.
Thanks Kevin.
I've watched my mom going up and down the stairs and up seems harder than down. I think this is because her calves are getting weak. Unfortunately, I don't think it's a co-ordination problem causing stairs to be difficult. I think it's weakness and this is not a PLS symptom
Kevin You and I Buddy i do up alot better than down . Ramps going up, dont like down .Undulating Surfaces bad too Like a Brick sidewalk thats not done level or a wood deck thats not level .Cant step over a hose laying in front of me without using my cane . These all go back to Balance and Coordination . To find out about weakness grab the Kitchen Counter by the sink, now kneel down on the left knee ,holding the counter and come back up ,now try the right knee . see which is harder to come back up ?? Geo
Whitsend
05-15-2008, 05:03 PM
sral....
Quite a few posts have come on since you asked me how long, etc.
I actually started having symptoms long before I would let myself believe there was something wrong. I started with the stiff hips in 2003. The tripping, foot dragging and balance problems started in 2004. They became significantly worse throughout 2005 and 2006. I started seeing a neurologist in 2006. He never gave me a diagnosis. Tried to convince me I had restless leg syndrome. I switched neuros.
I didn't get a diagnosis until 2007. At this point, I cannot walk without the walker. Not a single step. Have extreme difficulty turning over in bed. That's the girdle muscles, Caroline (Olly) mentioned. I've lost quite a bit of dexterity in my left hand and the right has started showing signs of loss too.
I don't believe I have lost any muscle tone.
Like Kevin, down is much more difficult for me than up. It's the balance thing.
I do not experience good days and bad days. After several weeks I'll just notice that something is a bit more difficult to do than it was a few weeks before. In other words, just slowly degenerating.
Whitsend,
Thanks for your response. You're fortunate that after all this time your still functioning.
Why would you say you cannot walk without a walker, is it because you can't get your leg to move?
You mentioned that you've lost no muscle tone, but have you noticed that your limbs are smaller just from lack of use?
i do have good and bad days, what i do one day if too much can leave me bedridden for days at a time. this happened last week trying to do a little gardening i was so stiff and in pain i was in bed for two days and could not move.
i have two hand rails on my stairs to help pull me up due to weakness like your mum, i may be moving home soon to a ground floor home as i have been accessed as needing one. going down or up is a problem with balance,i have fallen many times.
i think you may have a missconception about pls progression
firstly it is over the course of the desease slow progressing, life expectancy can be upto 25yrs.pls is progressive muscle weakness from muscle spasms, the spasms slowly spread to different areas over years till involving the whole body in some cases, and making the muscles weaker, it is not what some people think that the spasms make the muscles stiffer and stiffer till they are like a board.between the spasms/stiffness you can have times of floppy/weak muscles this continues to alternate causing muscle damage.
take care
caroline:)
Caroline,
Can you recall how you were two years into your symptoms? My mom is just 2.5 years in and she walks really slow and seems to have weakness. I think the stairs are due to bad knees as well. Two years ago they saw early signs of arthritis in her knees.
She told me this morning that her bad leg goes totally stiff in bad weather. She really is not feeling well though. It's not just the stiffness that bothers her. She also has pain.
Geo, did the best thing by moving to the warmth. Unfortunately, there really is no all year round warm place in Canada. :cry:
in the first few years my stiffness was more chronic, i have however been on baclofen approx 71/2 to 8yrs now so i think being on a maintenance dose all these years has controlled the spasms and stiffness. i am not saying i still dont have bad days/times when i am really stiff and my gait is more spastic than a waddle.i always have to hold onto something when getting up from a chair and do it slowly,due to the weak hip girdle/thigh muscles. and if i sit for too long my lower body is rigid and hard to get moving when i get up.
if she on any meds?you said her leg muscles were getting smaller. when was her last emg and was it ok?
take care
caroline:)
Caroline,
Thanks for sharing.
My mom's last EMG was 9 months ago. Her legs seem tighter and smaller. I'm wondering if this is because she is using her calves more to compensate for the weak/painful knees. If this was the case, smaller would be okay because they're leaner. Her calves don't look like jelly, they just look tight and smaller.
I don't know anymore. She got a prescription for Balcofen 4 months ago and I think she is going to fill it soon and start taking it.
Thanks for everything Caroline
the tightness could be making the muscles look smaller,if that makes any sence to you lol. my calf muscles are tiny,in winter i have a terrible time trying to get knee high boots that are not too big on the calf,there is always a huge gap at the back of the boot lol.
but my thighs are very floppy and big like they are in muscular dystrophy, i think this is due to the hip girdle weakness. my torso is normal but my back,shoulders and arms are very skinny like my calfs.
i dont look anyway near as grotesque as it sounds lol:oops:
take good care
caroline:-D
Caroline,
I'm sure you look BEAUTIFUL! :-D
By the way, did you notice your calves, arms and shoulders get smaller in your first bad years?
this has been gradual, in the early years my twitchings in these areas were a lot worse than they are now. wether it is the twitchings that have partly to do with the weakness resulting in wasting in these places i dont know or it is atrophy as in lmn.
i dont dwell too much on this or any of my symptoms any more, i take each day as it comes and i am thankfull for that. i dont discuss my mnd much with family and friends unless they ask,i dont deal in self pity. i'd rather talk about gardening or cats.
take care
caroline:-D
kevinw
05-16-2008, 10:53 AM
i agree with olly....I find myself holding back from talking to family & friends about my symptoms and how I feel. I think it has to do with for me it is now an "all day, everyday" thing (never a point where I can say I feel 100%. So I try not to bring it up or get into a deep coversation about it.......I don't want them to get sick of hearing that I don't always feel great.
that is exactly it kevin, it has been a 24/7-9yrs thing with me. people dont want to hear it all the time,it gets depressing. not that they dont care.
people here on this forum know far more about how i feel and how the pls effects me than family and friends,everyone can relate here and understand more.
i talk about my pls here only to help others but would rather talk about other things.
i'm going to have to log off now but hope to talk to you both again soon
take good care
caroline:-D
Caroline,
Thanks for your replies.
You mentioned that you had twitching in the beginning. Was this twitching in the affected area or all over?
Am I correct that you have had PLS for nine years and counting and have had negative EMGs?
Your twitchings must have been normal fasics and unrelated.
the twitchings are confined to certain places, left lower leg/foot= i have loss of contraction here/hypotonicity also slight wasting in my foot/ancle......... upper arms/biceps= i have loss of muscle here............shoulders= loss of muscle here and get shoulder contractures.........and definate rippling in right upper thigh=no signs.
the twitchings/fassics are not a single firing twitch but repetative twitching lasting hours and twitches for 4-6times then rests then twitches again 4-6 times then rests and so on.
i had a emg at the start of my illness but not one since, my neuro is aware of my possible lmn signs/symptoms but as very little is happening it does not warrant another emg just yet.
take care
caroline:-D
Thanks Caroline,
What peaked my interest was that you mentioned the twitches were worse in the beginning and that's probably when you would have had your EMG. This said, your EMG was clear even though you were having twitches. Would this be correct?
As for having another EMG ... what's the point -- It is what it is ... my mom refuses to even go to the neuro anymore.
you can have benign twitchings in pls with no atrophy, yes in the begining i did have twitchings all over...........but they are now confined to the places i mentioned,i do not know if this is why there is some muscle loss there or not but i do have loss of muscle tone in my left lower leg/lmn .
there are a few with pls who do have slight lmn involvement but it is not progressive enough or too bad to warrant a dx of als.
in clinical studies it would be classed as umn dominant als as in pure pls it is said there is no lmn involvement...........but on autopsy pls patients do have lmn involvement that may not be obviously present in life and if they had lived longer may have developed lmn symptoms. so to avoid anxiety they dx pls,however in the uk they class it all as mnd.
i am not overly concerned about any lmn problems i have due to my slow progression and unless my lower leg or foot shrivels up don't feel the need/or the worry of having a emg.
k sera sera,what ever will be will be,lol:-D
take care
caroline
Whitsend
05-20-2008, 04:18 PM
Caroline,
I agree wholeheartedly re: EMGs. What's the point of continued EMGs? It's not going to do anything to help me. It only helps the doc monitor the situation, but won't change the treatment nor the prognosis.
I don't have motor neuron disease, but I can't agree with you more.
What's the point of knowing if nothing can be done about it. I'm not pushing my mom to get another one done!
I think the reason we even go to a Doctor is somehow in the back of our Mind we think someone has an answer that someone else missed . I think we would like to think theres a cure when no one has one .
alot of people that have this go to a doctor and if he or she doesnt have an answer ,they dont go back ,they just accept it and move on . On the other hand alot of us think if we dont try and get a cure nothing will ever be done ,which is whats happening now ,there too many other major diseases out there to be tackled .So why should they work on PLS ? when only 2,000 in the US have it ? Geo
kevinw
05-21-2008, 09:40 AM
If someone could confirm to be that it will always be 100% PLS and will not progress past that point, then maybe I would stop going. I accept the "there's nothing we can do" statement at this point, but I will still continue to go just to make sure the symptoms are not leaning towards the next step.
But, I completely respect a persons feelings of "enough is enough" and I am not going thru anymore......and I might even get to that point sometime (just not yet).
Kevin ,Your Like me ,I still hold out hope and cant help but think that someone is just missing something .
I think Gamblers get this . Isnt that what life is, A GAMBLE .I think everyday we spin the Wheel and hope our number doesnt come up . I met a guy when i came here who was in perfect health . He died this week of Asbestos Camcer . Mesotheloma? So i wander about that Wheel ? Have A good day . Geo
kevinw
05-22-2008, 07:57 AM
LOL.....I never pass up a trip to Atlantic City, I can hear the sounds of the slots now. :-D
MtPockets
05-22-2008, 09:53 AM
Three opinions was enough for me. Everyone wants me to go to John Hopkins or one of the other leading hospitals, but I told them I have had enough of the sticking, poking, prodding, etc. that goes with ever visit. God knows what is going on and I just leave it in His hands to take care of one way or the other. That is how I manage not to worry about it and to have peace about the whole situation.
Everyone has to find their own way of dealing with the mysteries of MND diseases. I hope each of you finds a place of peace in the midst of the storm.
Notice the rainbow seems to have intercepted the tornado?
http://i160.photobucket.com/albums/t172/ShakeyMarble/Christian/rainbowstorm.jpg
kevinw
05-22-2008, 10:09 AM
Capt. Al......You have some of the best image files I've ever seen and you seem to attach them with the perfect comments. I don't know, the way I handle it changes from day to day.......more like a roller coaster of mindset about the whole situation.
MtPockets
05-23-2008, 09:40 AM
Thanks so much. I love rainbows. But I never get to see them without a storm. Here is a really unusual one that hardly ever appears. It is high, in I think Cirrus clouds. Formed by the water droplets.
http://i160.photobucket.com/albums/t172/ShakeyMarble/Christian/CloudRainbow.jpg
jimmig
05-23-2008, 10:50 AM
I think I probably know there is no good answer to these questions, but I have read a lot of threads regarding MND and pain. I recall reading in some the threads that the feeling of pain has nothing to do with any motor nueron condition. Now, I might just be missing something but how can someone have extremely stiff or fatigued muscles and not have pain and pulled muscles by the end of the work day?
Which brings me to the next even harder question of, when can one tell when it's just too much? I mean, when you try to make work as comfortable as possible but your legs are so exhausted and sore by the end of the day you are just recovering for the next day. It's a fine line of work ethics & obligation "verses" comfort & quaility of life outside of work.
Oh well, I've rambled on enough.....it's just one of things of trying to sort it all out. :-?
I guess I'm luckier than others. I to have brutal pain. It's all in neck and arms. I'm a
carpenter. Im still trying things i shouldn't in regards to work. It's always been a very
phiscally staining job. Prior to my dx. If i wasn't in unbelievable pain when i got home
form work. I would think i didn't earn my wage. I have always been friends with pain.
It, although, would be nice to sever our friendship.
hang in ther.....jimmig
Jimmig,
Is yours just a raw pain or can you tell that it's pain from spasms.
My mom's legs are also in constant pain, but pain is not suppose to be a symptom of PLS. Maybe those that have this constant pain have something else. I'm currently doing alot of research to determine if my mom's diagnosis is actually correct because the pain does not FIT.
Jim I was a Plumber 40 years and did new house rough ins . My bet is you have pain due to an on the job injury . You used to think your invincable ? One of those guys that drops dead on the job because he doesnt realize he has limits until the limits say Times up . LOL Geo
