Newly Diagnosed with PLS

[sral]

Crystal,


Do you have clonus? Clonus can be a symtom of PLS.

 

[sral]

Kimsoto,

My mom did two physio sessions and will not go back. She says the therapist is asking her to do things she cannot do. She does do some strenght exercises at home, but not many.

What limbs have been affected for you? What is the improvement do you see after 5 sessions?

 

[kimsoto]

sral,

At this point my legs are the only limbs affected. Physio is just stretching exercises, it's true after the first session I thought it was going to be a waste of time but I kept at it and as long as I continue to do the stretches at home my legs are not as stiff. Also the doc doubled my meds around the same time and also, staying active all of these things combined have definately helped.

 

[crystalkk]

sral,

I have a couple of beats of clonus, I think they call it unsustained.

 

[sral]

Crystal,

My mom only shows clonus when the doctor pushes back on the heel of her foot. When he does this, the front part of her foot shakes.

Is this how clonus works or does it happen even without anyone probing the limb?

 

[crystalkk]

sral,

Thats how mine is , I don't know if it happens without anyone probing the limb.
I will try and find out.

 

[crystalkk]

sral,
Clonus is repetitive, rhythmic contractions of a muscle when attempting to hold it in a stretched state.
It is only considered abnormal if it is 5 beats or more (sustained).

 

[sral]

Thanks Crystal. I guess the fact that when the neuro puts pressure on the heel and the front of her foot does not stop shaking it's definitely abnormal.

 

[easy]

Hello Katie Mae. Welcome to the forum! I totally agree that it is a big adjustment to go from apparently healthy to hoping things will not get much worse. I hope they find some answers for you soon, and lets hope they are good ones!

this is my 1st day on this site too. dont freak out about the uncertainty...it is as it is. it will take about 4 yrs. before they rule out als. i went to columbia univ. in nyc to try and get a definite answer. but they confirmed what the others did...it was pls or mnd-in europe they dont make distinctions about it-they dont know who lou gherig is ;-)

its either lower or upper involvement. i had emg's since 2003 and have never shown lower involvement. these motor neuron diseases are such a mystery. now i cant walk or speak but i dont have als. dont worry. youll know less than you think you should. i spent way too much time chasing answers that werent there. wait it out...its not easy but it beats wasting precious time. i'm 41 too.

 

[Alfie]

Pls

I don't know how this works, never done anything like this before but here goes.

I am a 41 year old mother of two and after more than a year of seeing several Neuros I have recently been diagnosed with PLS. My symptoms include muscle stiffness in both legs, brisk reflexes, babinski sign, and sometimes severe muscle spasms in my legs expecially at night. My neuro has told me that there is a chance of this evolving into ALS, does anyone know what the percentages are for this happening. Right now my EMG shows little lower involvement but apparently that can change.

I've done some research on different websites, but they all say pretty much the same thing. Can anyone give me some insight on the progression of this, will this eventually affect my speech, swallowing etc.

If anyone can help answer some of my questions, I would appreciate it.

Hi, i have been diagnosed since 2001 at the age of 41 ,i had all the same symptoms and fears as yourself ,since then my speach is slower but overall i think my condition regarding my balance and walking has not deteriated that much.I have had 3 EMG over the lst 6 yrs and like you no advance with my lower motor neurone. SO my advice is don't look forward into the unknown try and focuss on what you can do .I still work although i get tired but i will keep going, i also go to a private gym where i do a short exercise circuit to keep my muscles toned. I am on Baclofen and it helps a little with regards to cramps at night although some nights are worse than others i just try and take it a day at a time.

 

[olly]

hi alfie

ive had pls for over 8yrs, but recently its been found i have developed lmn signs.
i have progressive limb girdle muscle weakness, spasms,fassics,stiffness and 18mths ago started with mild speach,swallowing problems i am now 40yrs old.
i take 40-60mg baclofen,sleep med and amitriptalyne.
glad to see you join us,theres only us 2 and someone in whales who i know have pls in the uk with it being so rare.
bestwishes
caroline:-D

 

[Geo]

Olly theres more ,but ive found so many people do not want to talk . They go into a shell and hide there ,not helping therself or nobody else . My Speech therapist here told me of a guy that she gave therapy to who seemed to want to be in touch ,i told her tell him i would meet him for coffee ,he never showed .One person may not have much to share but a little bit is better than not sharing at all . Geo

 

[olly]

i find it so sad people want to hide away, nobody understands this desease better than us, we could even give neuros a run for there money lol. before this forum ive had times of total despair,suicial episodes.all i can say is to those out there do not try to go it alone,join this forum and talk to those who understand you. i love to chat and will chat to anyone,well almost lol.
all the best to you all
caroline:-D