The Ongoing Pain Question?

[olly]

sral

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

 

[sral]

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

 

[olly]

sral

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
take good care
caroline:-D

 

[sral]

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?

 

[olly]

sral

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]

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.

 

[olly]

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

 

[sral]

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.

 

[olly]

sral

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

 

[sral]

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.

 

[olly]

sral

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 diagnosed 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 diagnosed 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]

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.

 

[sral]

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!

 

[Geo]

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]

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).