Ruby
01-09-2006, 06:19 PM
Has anyone out there been diagnosed with PLS?
View Full Version »› diagnosis with primary lateral scelerosis?
dana
01-09-2006, 11:37 PM
What is PLS? (http://www.alsforums.com/definitions/primary-lateral-sclerosis.html)
Al
01-10-2006, 01:00 AM
Primary Lateral Sclerosis
LS: Sporadic, Adult onset
* ? Discrete syndrome vs ALS variant
* Clinical
o Onset
+ Slowly progressive
+ Legs before arms
+ Most commonly in 5th decade
+ No family history
o Motor dysfunction
+ Corticospinal ± corticobulbar tract dysfunction
# Spasticity: Legs > Arms
# Tendon reflexes: Brisk
# Plantar reflex: Normal or upgoing
# Pseudobulbar signs: Especially with disease onset > 45 years
+ Symmetric
+ No lower motor neuron change
o Sensory: Normal
o Frontal lobe dysfunction: Mild
o Progression
+ Gradual
+ Slow
+ > 3 years; Up to 3 decades
o Bladder function: Normal until late in disease
* Laboratory
o Magnetic stimulation: Absent or prolonged cortical motor evoked latencies
o MRI: Focal atrophy of precentral gyrus
o PET scan: Reduced glucose consumption in pericentral region
o Central motor conduction times: Prolonged
o Normal: Serum; CSF; EMG; Spinal cord imaging; Serum CK; CSF protein
* Disease association: ? Breast cnacer
* Pathology
o Corticospinal tract: Axonal loss
o Normal: Anterior horn cells ± Betz cells
* Differential diagnosis
o Structural disorders: Spinal; Foramen magnum; Hydrocephalus
o Hereditary spinal disorders
o Infections
PLS: Recessive, Juvenile onset9
l Alsin ; Chromosome 2q33; Recessive
* Gene mutations
o PLS: Deletion in exon 9
o ALS2: Mutation in another region of alsin gene
o Familial spastic paraparesis, infantile onset
* Clinical
o Onset: Childhood
o Spasticity: Bulbar; Extremities
o Gaze paresis
o Normal: Cognition; Sensation
* Laboratory
o Central motor conduction times: Delayed or Unrecordable
o EMG: No denervation
I can't recall anyone here saying they were diagnosed with it. The preceding was taken from notes on the George Washington University Neurological Website St. Louis Mi.
LS: Sporadic, Adult onset
* ? Discrete syndrome vs ALS variant
* Clinical
o Onset
+ Slowly progressive
+ Legs before arms
+ Most commonly in 5th decade
+ No family history
o Motor dysfunction
+ Corticospinal ± corticobulbar tract dysfunction
# Spasticity: Legs > Arms
# Tendon reflexes: Brisk
# Plantar reflex: Normal or upgoing
# Pseudobulbar signs: Especially with disease onset > 45 years
+ Symmetric
+ No lower motor neuron change
o Sensory: Normal
o Frontal lobe dysfunction: Mild
o Progression
+ Gradual
+ Slow
+ > 3 years; Up to 3 decades
o Bladder function: Normal until late in disease
* Laboratory
o Magnetic stimulation: Absent or prolonged cortical motor evoked latencies
o MRI: Focal atrophy of precentral gyrus
o PET scan: Reduced glucose consumption in pericentral region
o Central motor conduction times: Prolonged
o Normal: Serum; CSF; EMG; Spinal cord imaging; Serum CK; CSF protein
* Disease association: ? Breast cnacer
* Pathology
o Corticospinal tract: Axonal loss
o Normal: Anterior horn cells ± Betz cells
* Differential diagnosis
o Structural disorders: Spinal; Foramen magnum; Hydrocephalus
o Hereditary spinal disorders
o Infections
PLS: Recessive, Juvenile onset9
l Alsin ; Chromosome 2q33; Recessive
* Gene mutations
o PLS: Deletion in exon 9
o ALS2: Mutation in another region of alsin gene
o Familial spastic paraparesis, infantile onset
* Clinical
o Onset: Childhood
o Spasticity: Bulbar; Extremities
o Gaze paresis
o Normal: Cognition; Sensation
* Laboratory
o Central motor conduction times: Delayed or Unrecordable
o EMG: No denervation
I can't recall anyone here saying they were diagnosed with it. The preceding was taken from notes on the George Washington University Neurological Website St. Louis Mi.
Ruby
01-10-2006, 12:51 PM
Hi - I do not know how to use this site yet - do not know how to answer your question in the site, what is PLS, so please bear with me.
PLS from a patient with the suspected disease:
It is a rare form of ALS. It starts at your legs - and works its way up.
It is quite slow progressing. Life span 3 - 30 years.
I have been to four neurologists and the diagnosis has not been confirmed - I have to get more symptoms.
I am looking for people with PLS to talk to.
PLS from a patient with the suspected disease:
It is a rare form of ALS. It starts at your legs - and works its way up.
It is quite slow progressing. Life span 3 - 30 years.
I have been to four neurologists and the diagnosis has not been confirmed - I have to get more symptoms.
I am looking for people with PLS to talk to.
Al
01-10-2006, 03:43 PM
Sorry Ruby and Dana. PLS is Primary Lateral Sclerosis. In my post I just posted the clinical notes. I should have just picked out the pertinent information. I did say at the bottom of my post that I haven't heard of anyone on site that had PLS.
Four neurologists and no confirmation of a particular disease is a bit unnerving but looking at the bright side depending on what your symptoms are now you should live long as they say 3 years to 30 years is the life span with the disease. ALS is 2 or 3 to 5 depending on whose information you are using.
Most of the motor neuron diseases are hard to pinpoint with ALS being the hardest to diagnose. They usually say you don't have anything else so it must be ALS. Have you tried going to Yahoo Groups PLS. I'm not sure if there is one there but there is one for most of the common ailments and the not so common ones as well. Good luck and welcome to the site.
Al.
Four neurologists and no confirmation of a particular disease is a bit unnerving but looking at the bright side depending on what your symptoms are now you should live long as they say 3 years to 30 years is the life span with the disease. ALS is 2 or 3 to 5 depending on whose information you are using.
Most of the motor neuron diseases are hard to pinpoint with ALS being the hardest to diagnose. They usually say you don't have anything else so it must be ALS. Have you tried going to Yahoo Groups PLS. I'm not sure if there is one there but there is one for most of the common ailments and the not so common ones as well. Good luck and welcome to the site.
Al.
Ruby
01-10-2006, 09:43 PM
I hope you receive this Mike. I want to thank you for the sites on PLS.
I have only tried the Mayo Clinic but I found a good forum. Thanks again. ruby
I have only tried the Mayo Clinic but I found a good forum. Thanks again. ruby
ricturn
02-09-2006, 08:27 PM
Hello, Ruby, and all,
I was diagnosed in 2002 with PLS, a slowly progressing form of ALS.
I know of one other person, Laura Woods, from Ottawa [I forgot her email addy - blast !]
Please, contact me so we can compare symptoms and other pertinent factors. :roll:
I was diagnosed in 2002 with PLS, a slowly progressing form of ALS.
I know of one other person, Laura Woods, from Ottawa [I forgot her email addy - blast !]
Please, contact me so we can compare symptoms and other pertinent factors. :roll:
ruby ben
02-15-2006, 04:47 PM
Hi ricturn, sorry to take so long to answer.
I started playing around joining groups a couple of weeks ago.
This is one is good but I would also suggest you join Yahoo.com/group/PLS-Friends.
I am surprised that you have been diagnosed with PLS if you had it a short time when diagnosed.
My symptoms started in Jan./03. Jan./04 I was dignosed with ALS. Three months later and another Electromyogram, he said "no" as it was not progressing fast enough. Now they say they are "leaning" towards PLS. I gather from what other support members say it takes over 5 years before you can definitely be diagnosed with PLS. In between I guess we are in limbo waiting to see if it is going to change to ALS???
My symptoms started in my right leg. Tripping, limping, etc. - gradually getting worse. The leg atrophied (in the first 3 mons.) so that is giving the Drs. a problem. It is now just like a dead weight I drag around. My right arm does not swing when I walk and I am starting to loose my balance. My problems are nothing when I read about other members. So I try to live for today and try not to think about tomorrow!........ruby from Vancouver :D
I started playing around joining groups a couple of weeks ago.
This is one is good but I would also suggest you join Yahoo.com/group/PLS-Friends.
I am surprised that you have been diagnosed with PLS if you had it a short time when diagnosed.
My symptoms started in Jan./03. Jan./04 I was dignosed with ALS. Three months later and another Electromyogram, he said "no" as it was not progressing fast enough. Now they say they are "leaning" towards PLS. I gather from what other support members say it takes over 5 years before you can definitely be diagnosed with PLS. In between I guess we are in limbo waiting to see if it is going to change to ALS???
My symptoms started in my right leg. Tripping, limping, etc. - gradually getting worse. The leg atrophied (in the first 3 mons.) so that is giving the Drs. a problem. It is now just like a dead weight I drag around. My right arm does not swing when I walk and I am starting to loose my balance. My problems are nothing when I read about other members. So I try to live for today and try not to think about tomorrow!........ruby from Vancouver :D
ruby ben
02-15-2006, 04:57 PM
Hi ricturn!
Sorry I am still getting use to this site. I just answered you but I don't know if you will see it under General Discussions.
Re the site I suggested - Jeannie gave the same site but in better detail.
later.....................ruby from Vancouver :oops:
Sorry I am still getting use to this site. I just answered you but I don't know if you will see it under General Discussions.
Re the site I suggested - Jeannie gave the same site but in better detail.
later.....................ruby from Vancouver :oops:
marlo
02-20-2006, 02:50 PM
Has anyone out there been diagnosed with PLS?
Hi Ruby,
My name is Marlo, i was originally diagnosted with ALS but when i was sent for a second opinion, the doctor send it could be PLS. So either way i have a terminal illness. So don't think your in this alone,, cause your not. There are many of us out there. Take care, we'll talk again. Marlo
Hi Ruby,
My name is Marlo, i was originally diagnosted with ALS but when i was sent for a second opinion, the doctor send it could be PLS. So either way i have a terminal illness. So don't think your in this alone,, cause your not. There are many of us out there. Take care, we'll talk again. Marlo
Brandy L
04-16-2006, 09:23 PM
My mom was diagnosed 4 years ago with PLS. I am looking to talk to anyone who has been affected by PLS.
Thanks
Brandy
Thanks
Brandy
lindap
05-24-2006, 05:57 PM
My name is Linda and I have PLS.
The Woods
05-27-2006, 04:29 PM
Has anyone out there been diagnosed with PLS?
Yes, my husband has been diagnosed with PLS...
Yes, my husband has been diagnosed with PLS...
stu
06-01-2006, 03:53 PM
My father-inlaw has been diagnosed for the past 15 years or so. PLS is as not as terminal as ALS is, and much much, much, more rare. You have a 1 in 30,000 chance of getting ALS. 1 in 10,000,000 chance with PLS. It's a disease of exclusion, as there is not one test for it. All other diseases must be ruled out.
My father-in-law is in a wheelchair, and only his immediate family can understand him when he talks. He has complete use of his mind (sharpest guy I ever met) and is able to type emails, role his own chair, and work on his model train set. He is also able to feed himself to an extent. He even authored an autobiography. It took 7 years for him to be diagnosed - the Mayo Clinic couldn't figure it out. It was some doctor in Michigan. I think the progression of the disease has taken it's course, as he is not getting worse. What does affect him is his advancing age (72). Unrelated medical issues seem to creep in as well. There was a scare 3 years ago when he got a rare virus he caught in Arizona. His weakened condition made it tough, but he got through it.
It seems to me that he has strength in his muscles (what a handshake!!), they are just so cramped up, he can move them slowly and slightly. He drools, as he has little facial muscle control. He takes 2-3 pills a day of various medications.
His care taker is also his wife, who has been a saint over the last 15 years providing 24 hour care. She is having joint problems, probably as a result of the care taking over the years. She has had a knee replacement and been diagnosed with advanced carpul tunnel in both wrists.
He was a marine in the 1950's, and is Sicillian - so he views himself as a tough guy. Without question this trait has helped him cope, but for a guy who was very active and physical, there's no doubt it's been more than difficult. He's adjusted well, however. His condition has had an interesting side affect - he's a bit more emotional than ever. He laughs more, as well as cries without being able to "stop it". It can be fun to see such emotion coming from him, especially since he's "so tough".
Don't know if this will help anyone, but I thought I would share this with people. He's an amazing man, really, and unfortunately this disease has made it hard for him. It's the only thing that can keep him down. His spirit is strong.
My father-in-law is in a wheelchair, and only his immediate family can understand him when he talks. He has complete use of his mind (sharpest guy I ever met) and is able to type emails, role his own chair, and work on his model train set. He is also able to feed himself to an extent. He even authored an autobiography. It took 7 years for him to be diagnosed - the Mayo Clinic couldn't figure it out. It was some doctor in Michigan. I think the progression of the disease has taken it's course, as he is not getting worse. What does affect him is his advancing age (72). Unrelated medical issues seem to creep in as well. There was a scare 3 years ago when he got a rare virus he caught in Arizona. His weakened condition made it tough, but he got through it.
It seems to me that he has strength in his muscles (what a handshake!!), they are just so cramped up, he can move them slowly and slightly. He drools, as he has little facial muscle control. He takes 2-3 pills a day of various medications.
His care taker is also his wife, who has been a saint over the last 15 years providing 24 hour care. She is having joint problems, probably as a result of the care taking over the years. She has had a knee replacement and been diagnosed with advanced carpul tunnel in both wrists.
He was a marine in the 1950's, and is Sicillian - so he views himself as a tough guy. Without question this trait has helped him cope, but for a guy who was very active and physical, there's no doubt it's been more than difficult. He's adjusted well, however. His condition has had an interesting side affect - he's a bit more emotional than ever. He laughs more, as well as cries without being able to "stop it". It can be fun to see such emotion coming from him, especially since he's "so tough".
Don't know if this will help anyone, but I thought I would share this with people. He's an amazing man, really, and unfortunately this disease has made it hard for him. It's the only thing that can keep him down. His spirit is strong.
Al
06-01-2006, 11:27 PM
Thanks Stu. A lot of times we receive a diagnosis and all the doctors will say is get your affairs in order. It is heatening to hear that some of us can live otside "the envelope" as they say and still continue to lead productive lives with an illness. Too many want to put you in a space and say Oh you can't do that you're disabled. Proof of what some people can do is good news to hear. Thanks again. Al.
kathmc
06-09-2006, 08:36 PM
Hi,
Am new to this group, PLS & computers.
My major symptoms of falling, decreasing strength and compromised balance progressed for 4 to 5 years and I went to 6 Neurologist b4 getting a likely answer. A previous injury b-4 helped confuse things, also I lived in small rural university town until 07/2004.
Nov. 05 neur. Dr. #5 was sure it was PLS. spec. appt. on Feb. 14, 06 agreed. This was a relief as neuro. #4 said nothing wrong w/ me neurologically. Good prognosis she said. Only she never shared it w/me. Would still love to hear all about it.
Would be great to connect w/ others w/ PLS. Know no one in Lexington and life here has been endless Dr. apt & referrals. We are now looking for accessible house & van.
Kathy
Am new to this group, PLS & computers.
My major symptoms of falling, decreasing strength and compromised balance progressed for 4 to 5 years and I went to 6 Neurologist b4 getting a likely answer. A previous injury b-4 helped confuse things, also I lived in small rural university town until 07/2004.
Nov. 05 neur. Dr. #5 was sure it was PLS. spec. appt. on Feb. 14, 06 agreed. This was a relief as neuro. #4 said nothing wrong w/ me neurologically. Good prognosis she said. Only she never shared it w/me. Would still love to hear all about it.
Would be great to connect w/ others w/ PLS. Know no one in Lexington and life here has been endless Dr. apt & referrals. We are now looking for accessible house & van.
Kathy
Al
06-10-2006, 01:16 AM
Hi Kathy welcome to the forum. Sorry you have to be here but glad you found us. I hope some of the people here will be able to help. I seem to recall a while back someone else from north of Lexington on here. Not sure if they had ALS or PLS but you are not alone out there. I have been to Lexington quite a few times and love it down there. The people are real friendly and now I just have a niece left in Lex. Have you called the local ALSA chapter or MDA chapter yet? One good thing about Lexington is that there seems to be a lot of bungalows so it should be fairly easy to find something to fit your needs. Also check with ALSA to see if they have a page on their site with used vans. One of our websites up here has listings for vans every once in a while when someone has outgrown the use of it. Stick with us and we'll try to help if we can. AL. By the way Kathy you did mean Lexington Kentucky didn't you?
kathmc
06-11-2006, 01:45 PM
Hi Al,
Thanks for the welcome. I looked over some of the threads the day b4 I registered. It was a relief that u guys talked about this disease and answered questions. Yes, this is Lexington, Ky. I moved here 7/1/04. B4 that we lived in Carbondale Ill. for 16+ years. That is not near Chicago. It is in southern Illinois, just an hour from Puaducah, Ky. Southern Ill. University ( SIUC ) is there.
B4 we got the computer my husband tried to find PLS (spelled out) on his computer at work. He only found a page W/ little info. 1st. PLS search I did gave thousands+ of items not the pls I was looking for. Got tired of sifting for hours. Only found out few weeks ago to use " " around search item.
I read that the pls diagnosis is sometimes changed to als. Also read one small study of ??17?? patients. Autopsies revealed that despite symptoms, ??2?? of those patients thought to have one had the other. A few other papers I browsed indicated that some neurologists are unsure that pls should have a separate designation. Not hard science yet. My interest was because neuro #6 's answer was roundabout on how long pls had been a recognized disease. In fact he doesn't like to take time to answer questions at all. Thus I look elsewhere.
I am going to need input in using this site. Tried a live chat once, never went back. Computer lingo new to me. Took a while to figure out what a thread was. Unsure of best answers on part of site that gives you choices in how to set it up. Was surprised by talk of referrals & prizes. What is that about. Your answers( remember I lurked a bit) are like a prize to me.
Al, thanks again. am slow hunt & peck typist so gotta get some other stuff done while I have help here.
K.
Afraid I didn't log out the other nite. Looked but didn't see log out button. Sorry! I don't computer every day. I will try to ck. e-mail & this site more often.
Thanks for the welcome. I looked over some of the threads the day b4 I registered. It was a relief that u guys talked about this disease and answered questions. Yes, this is Lexington, Ky. I moved here 7/1/04. B4 that we lived in Carbondale Ill. for 16+ years. That is not near Chicago. It is in southern Illinois, just an hour from Puaducah, Ky. Southern Ill. University ( SIUC ) is there.
B4 we got the computer my husband tried to find PLS (spelled out) on his computer at work. He only found a page W/ little info. 1st. PLS search I did gave thousands+ of items not the pls I was looking for. Got tired of sifting for hours. Only found out few weeks ago to use " " around search item.
I read that the pls diagnosis is sometimes changed to als. Also read one small study of ??17?? patients. Autopsies revealed that despite symptoms, ??2?? of those patients thought to have one had the other. A few other papers I browsed indicated that some neurologists are unsure that pls should have a separate designation. Not hard science yet. My interest was because neuro #6 's answer was roundabout on how long pls had been a recognized disease. In fact he doesn't like to take time to answer questions at all. Thus I look elsewhere.
I am going to need input in using this site. Tried a live chat once, never went back. Computer lingo new to me. Took a while to figure out what a thread was. Unsure of best answers on part of site that gives you choices in how to set it up. Was surprised by talk of referrals & prizes. What is that about. Your answers( remember I lurked a bit) are like a prize to me.
Al, thanks again. am slow hunt & peck typist so gotta get some other stuff done while I have help here.
K.
Afraid I didn't log out the other nite. Looked but didn't see log out button. Sorry! I don't computer every day. I will try to ck. e-mail & this site more often.
Al
06-12-2006, 12:27 AM
I never log out either. Don't think it makes a difference one way or the other but if you leave and check email if you didn't log out you can come back in without logging in again. Convenient at times. I can only use 2 fingers or splints to type now myself.
mookyred
07-23-2006, 08:42 AM
Hello,
I was diagnosed with MS in 2005. They now this I have PLS or HSP. I have to go to the National Institute for Health or University of Michigan for further tests I guess. These two places deal with PLS and HSP. Have you been diagnosed? How Long? Where are you at with the disease?
Thanks
Mary Kay
I was diagnosed with MS in 2005. They now this I have PLS or HSP. I have to go to the National Institute for Health or University of Michigan for further tests I guess. These two places deal with PLS and HSP. Have you been diagnosed? How Long? Where are you at with the disease?
Thanks
Mary Kay
Al
07-24-2006, 01:40 PM
Hi Mary Kay. Welcome to our little corner of the world. Most of us here have an ALS diagnosis but there are a couple with PLS so you might find someone in common here. Take care. AL.
mookyred
07-25-2006, 03:01 PM
Hi Kathy,
You sound like me..only this will be the fouth nero I'll be going to. They thought I had MS and now PLS or HSP. I am curious about a few things. How did you disease start?
Do you have spasticity in your legs? When I get nervous or my body gets tense from anything, including the cold my legs go completely stiff. This was actually my first symptom. It started in the back of my leg when I experienced any anxiety and has gotten much much worse. Do you exercise or take any medication?
I also started with falls, I have balance problems, weakness on my right side, and spasticity. This all started in 2003.
Thanks for anything you can help me with.
Mary Kay
You sound like me..only this will be the fouth nero I'll be going to. They thought I had MS and now PLS or HSP. I am curious about a few things. How did you disease start?
Do you have spasticity in your legs? When I get nervous or my body gets tense from anything, including the cold my legs go completely stiff. This was actually my first symptom. It started in the back of my leg when I experienced any anxiety and has gotten much much worse. Do you exercise or take any medication?
I also started with falls, I have balance problems, weakness on my right side, and spasticity. This all started in 2003.
Thanks for anything you can help me with.
Mary Kay
kathmc
08-18-2006, 09:16 PM
Boy am I embarrassed. I just plunged in when new and didn't think to check back later to see newer replys. Later I thought about it but couldn't remember where I had been. I'll try to answer your questions. It's been about 6-7 years since symptoms started that I couldn't ignore or adapt to started.
It probably started a few years before when left toe dragged now and then. Always blamed the pavement. Then had a stupid accident where someones dog, on a long rope, wrapped me up, knocked me down and in process left ankle & knee severely twisted. Took a while for swelling to leave, pain didn't.
After started regular activities kept falling to left. A year of that and I am using the walls to walk cause 4 some reason I can walk much better and faster that way. The back of the left calf felt odd--called it wooden. Also suddenly had charley horses in the morning. That name sounds like a pleasant children's book for it to be such a big pain. Then the falls were in every direction including backwards. what I ignored was increasing weakness and worsening balance problems. I truly thought the Dr. would figure it out, I'd get treated and go back to my old life.
Some simple movements done all my life suddenly couldn't be accomplished. Dr. may have thought I was crazy to complain that suddenly couldn't stand on uneven ground or flick the bedcovers off in morning w/ left foot. Everything took more effort. Started sliding cooking pots instesd of lifting them, making one dish meals as the elaborate meals were exhausting. This is when had to first invent a way to get up a supersized step from laundry room to kitchen. To get into the truck drilled a hole in a one step stool and attached a long leash so it could be pulled in after I got in seat. Part of me now wonders why didn't go to Dr. and refuse to leave till he came up w/ answer. Nobody had to adapt that much that I had ever witnessed. It was so gradual it just snuck in. I only started describing it as progressive 4+ years and I can't balance w/ a cane and wear a fanny pack or carry a purse any more.
After kept falling backward started crying fiercely. I was raised not to cry, got punished harder for it as a child so at 50 to suddenly be bawling on the street was a shock to me. Then I would cry if something was beautiful--music whatever---thought was loosing my mind. I resisted a cane until I was falling into one thing after another. That worked for about a year or so went to double canes w/ elbow holds because I was holding walls w/ one hand, cane w/ other. Left leg got number and number, less and less function.
My computer time is up for now. Hubby needs to go to bed and he has to tuck me in first. Sorry no time to edit for brevity or spell. Don't know if crying/ laughing thing w/ PLS or its just me. Will try to return tomorrow. See if forgot anything.
Kathy
It probably started a few years before when left toe dragged now and then. Always blamed the pavement. Then had a stupid accident where someones dog, on a long rope, wrapped me up, knocked me down and in process left ankle & knee severely twisted. Took a while for swelling to leave, pain didn't.
After started regular activities kept falling to left. A year of that and I am using the walls to walk cause 4 some reason I can walk much better and faster that way. The back of the left calf felt odd--called it wooden. Also suddenly had charley horses in the morning. That name sounds like a pleasant children's book for it to be such a big pain. Then the falls were in every direction including backwards. what I ignored was increasing weakness and worsening balance problems. I truly thought the Dr. would figure it out, I'd get treated and go back to my old life.
Some simple movements done all my life suddenly couldn't be accomplished. Dr. may have thought I was crazy to complain that suddenly couldn't stand on uneven ground or flick the bedcovers off in morning w/ left foot. Everything took more effort. Started sliding cooking pots instesd of lifting them, making one dish meals as the elaborate meals were exhausting. This is when had to first invent a way to get up a supersized step from laundry room to kitchen. To get into the truck drilled a hole in a one step stool and attached a long leash so it could be pulled in after I got in seat. Part of me now wonders why didn't go to Dr. and refuse to leave till he came up w/ answer. Nobody had to adapt that much that I had ever witnessed. It was so gradual it just snuck in. I only started describing it as progressive 4+ years and I can't balance w/ a cane and wear a fanny pack or carry a purse any more.
After kept falling backward started crying fiercely. I was raised not to cry, got punished harder for it as a child so at 50 to suddenly be bawling on the street was a shock to me. Then I would cry if something was beautiful--music whatever---thought was loosing my mind. I resisted a cane until I was falling into one thing after another. That worked for about a year or so went to double canes w/ elbow holds because I was holding walls w/ one hand, cane w/ other. Left leg got number and number, less and less function.
My computer time is up for now. Hubby needs to go to bed and he has to tuck me in first. Sorry no time to edit for brevity or spell. Don't know if crying/ laughing thing w/ PLS or its just me. Will try to return tomorrow. See if forgot anything.
Kathy
jazzshampoo1
11-14-2006, 08:10 PM
Can we talk about it! I`v had this for 15 yrs since i was 40 i felt the fatigue while i was working in an office as an admin. clerk. I had been with the Austrailian Co. for ten yrs before feeling ill. I worked another 4 yrs before leaving to go on to disability as my GP recommended. I am now 55 yrs old i am not doing too bad, as this PLS is a slow progressive thing fatigue being the most inconvient thing about it. :)
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