Re: Do you think I have PLS or not??

[Guest guest]

Dear Maureen,

Hang in there!!! I think many or most people have gone through the same

scenario. My symptoms started 20 years ago at the age of 25. PLS was mentioned

but I was too young. It was possible MS, probably. The doctor said time would

tell if it was MS or a motor neuron disorder. A few years later the symptoms

burned out. And I forgot about them. As I approached midlife the symptoms

resurfaced and progressed faster to change diagnosis to ALS.

In the duration of my early symptoms a very good and wise neurologist told me to

trust and listen to my body. You will know when something is wrong. The name of

an illness(in relation to MS or motor neuron disease) doesn't matter as long as

the symptoms are being treated. It sounds like your doctor is treating your

symptoms but has not given a name yet. If it was in your head your doctor would

not be treating you with meds. It sure doesn't sound like it is in your head.

Your symptoms sound like they could be PLS. But I am not a doctor. Time will

tell and maybe the symptoms will plateau and you will not progress, ever!!!!

Even better a cure for all neuromuscular diseases!!! Hang in there and keep the

faith!!!

N.

Do you think I have PLS or not??

After 9.5 years from onset of symptoms and after 7.5 years of seeing

neurologists I still do not have a diagnosis. I cant stand it!!

First Neuro told me to see Physchiatrist - no help there. 2nd Neuro

was MS specialist - dont have that. 3rd and 4th Neuro's were Movement

disorder specialists - dont have that. Have now been referred to a

Neuro who specialises in disorders of Motor Neurons - hopefully will

get diagnosed. I am asking you all because I have read where

neurologists have told their patients to visit Message boards to get

answers and some people have diagnosed themselves by coming here.

After reading extensively what you people here have to say about your

symptoms, I believe that after 9 years I am too healthy for PLS and I

dont have many of the symptoms that you all have. I dont have

fatigue, muscle jerks or twitches that keep me awake at night. I dont

have bladder or bowel problems. I sleep like a log. I have

overreactive reflexes and poor balance and coordination. I suffer no

pain. My speech became slurred and unclear last year but baclofen has

helped that. I also take clonazepam. I have slowed swallowing and

get the choking spasm very occasionally. I do have Pseudobulbar

palsy. I stiffen when anxious or cold and do have increased tone in

my muscles. I have a limp. I can zoom around with my walker for

hours (except when I pull a groin muscle) I use no aids when walking

in the house and can do nearly all household duties. I use a walker

or cane outside the home because as soon as i get into an open space,

I panic and cannot move and get dizzy and feel i am going to fall. I

believe these are panic attacks. My physiotherapist tells me that I

can walk without aids in open spaces as i walk normally when walking

between the 2 bars. Maybe my problem is part pyshcological. I

consulted a psychiatrist about this and asked about hypnotherapy for

my anxiety. He was reluctant to suggest it as i do have an underlying

neurological disorder. I came to this message board as 4th Neuro

suggested PLS earlier this year.

So I want to ask you all, do you think I have PLS or not??

thanking you

Maureen

[Guest guest]

Maureen

 

I can  only relate my  own   symptons and leave you    to  judge if  they

are similar to your descriptions.

 

I know  I  have a neurological disorder because the neurologists have

confirmed this from their own clinical assessments.

 

I have : overactive reflexes, increasing spasticity of my legs,  clonus 

(sort   of  shaking)  when  I  try  to direct my  foot  into  a  shoe,

 reduced fine motor control  of my  fingers, slurring  of my  speech,

increased startle reflex and some reduction of control of my emotions.

 

I  still walk completely unaided - but need to  have a handrail  to  climb

or descend stairs or a slope,

I'm still  understood when  I talk ,

I can still function completely in my   job.

But  find  housework more of a problem.

 

2 neurologists have told me I  have spastic paraplegia and that this is from

Upper Motor Neuron Disease -  having ruled out all other  causes,

1 neurologist has given this the label PLS.

 

I  have  had symptons for at least 4 years but  this  could be  longer as  

my deterioration  has  really  been  quite slow and to  start with I  

didn't  think  anything was wrong.

The  symptom   that  really  convinced  me something was wrong was when  I  

could no  longer  run - much as  I  tried to tell  my  legs to do this 

they   just  wouldn't respond.

 

I  hope this  is  some help.

 

Kiwi

 

Do you think I have PLS or not??

After 9.5 years from onset of symptoms and after 7.5 years of seeing

neurologists I still do not have a diagnosis.  I cant stand it!!

First Neuro told me to see Physchiatrist - no help there.  2nd Neuro

was MS specialist - dont have that.  3rd and 4th Neuro's were Movement

disorder specialists - dont have that.  Have now been referred to a

Neuro who specialises in disorders of Motor Neurons - hopefully will

get diagnosed.  I am asking you all because I have read where

neurologists have told their patients to visit Message boards to get

answers and some people have diagnosed themselves by coming here.

After reading extensively what you people here have to say about your

symptoms, I believe that after 9 years I am too healthy for PLS and I

dont have many of the symptoms that you all have.  I dont have

fatigue, muscle jerks or twitches that keep me awake at night.  I dont

have bladder or bowel problems.  I sleep like a log.  I have

overreactive reflexes and poor balance and coordination. I suffer no

pain. My speech became slurred and unclear last year but baclofen has

helped that.  I also take clonazepam.  I have slowed swallowing and

get the choking spasm very occasionally.  I do have Pseudobulbar

palsy.  I stiffen when anxious or cold and do have increased tone in

my muscles.  I have a limp.  I can zoom around with my walker for

hours (except when I pull a groin muscle) I use no aids when walking

in the house and can do nearly all household duties.  I use a walker

or cane outside the home because as soon as i get into an open space,

I panic and cannot move and get dizzy and feel i am going to fall.  I

believe these are panic attacks. My physiotherapist tells me that I

can walk without aids in open spaces as i walk normally when walking

between the 2 bars.  Maybe my problem is part pyshcological.  I

consulted a psychiatrist about this and asked about hypnotherapy for

my anxiety.  He was reluctant to suggest it as i do have an underlying

neurological disorder.  I came to this message board as 4th Neuro

suggested PLS earlier this year.

So I want to ask you all, do you think I have PLS or not??

thanking you

Maureen

[Guest guest]

In a message dated 9/26/2004 7:07:47 PM Pacific Daylight Time,

mazzie20022000@... writes:

I dont have

fatigue, muscle jerks or twitches that keep me awake at night. I dont

have bladder or bowel problems. I sleep like a log. I have

overreactive reflexes and poor balance and coordination. I suffer no

pain. My speech became slurred and unclear last year but baclofen has

helped that. I also take clonazepam. I have slowed swallowing and

get the choking spasm very occasionally. I do have Pseudobulbar

palsy. I stiffen when anxious or cold and do have increased tone in

my muscles. I have a limp.

Maureen -- remind me, where do you live?

All PLSers don't have bladder or bowel problems (those who complain of

urinary urgency usually take a Rx such as Ditropan to control. These two

symptoms

are more common in our sister disorder HSP). Overreactive reflexes, poor

balance and coordination fits in with PLS. If Baclofen helped your speech

perhaps your voice muscles were tight...some in the group who have tight voice

muscles have botox shots to help with their speech. My speech and swallowing

improved for some unknown reason, I don't take Baclofen. I think I just

learned new ways of coping. My voice muscles are week so Botox wouldn't help

me...I was looking for that as a way to perhaps enable to me to sing again. I

don't use any aids around the house either but I do get extremely anxious when

I am in a crowd because I know if I get bumped and fall I won't be able to

get up. Usually I'm hanging on for dear life to my husband. I do have a

walker but have only used it a few times. Probably should outside.

Cold weather and stress definitely fits in also and limping or some kind of

gait disturbance. Now fatigue -- if you don't have that....you're extremely

fortunate. " One " of my early diagnosis was Pseudobulbar palsy. I rarely

have pain and when I do it's because of the way I've been walking or have

overdone. I don't have cramps that keep me, or awaken me, so I sleep pretty

good.

It took me 4 years to get the PLS dx and I think it was a " wait and see " to

rule out ALS.

Gentner

Alone we can do so little. Together we can do so much.

Helen Keller (1880-1968)

[Guest guest]

Maureen: Hi! I read your email and all the responses to it to date

and agree with everything that has been written. My symptoms are

almost identical to yours. I was diagnosed about 4 years ago, but

understand my symptoms started later in life than most PLS'ers. I

was in my late 60's at the time. After one year of observing me, my

neurologist ruled out ALS and after 3 years of observing me he said

that my rate of degeneration was " mild " and that the rate doesn't

change. I use a cane when I go out. Cold and stress certainly

affect the spasticity and it's just been in the last couple months

that I must limit standing for too long, which brings on stiffness.

I am on no medications. My voice is affected, but only in that I

can't talk as fast as I used to -- the enunciation is still good.I've

often said that I feel like I'm now living in slow motion. I

definitely avoid crowds because I could not recoop from being bumped;

I have even had to ask individuals who tend to touch me when they

talk or express concern to please refrain from that.

As with the other responders, I am not a physician, but, if my

diagnosis (PLS) is accurate, it sure sounds lot like what you are

living with.

Dorothy

> After 9.5 years from onset of symptoms and after 7.5 years of seeing

> neurologists I still do not have a diagnosis. I cant stand it!!

> First Neuro told me to see Physchiatrist - no help there. 2nd Neuro

> was MS specialist - dont have that. 3rd and 4th Neuro's were

Movement

> disorder specialists - dont have that. Have now been referred to a

> Neuro who specialises in disorders of Motor Neurons - hopefully will

> get diagnosed. I am asking you all because I have read where

> neurologists have told their patients to visit Message boards to get

> answers and some people have diagnosed themselves by coming here.

> After reading extensively what you people here have to say about

your

> symptoms, I believe that after 9 years I am too healthy for PLS and

I

> dont have many of the symptoms that you all have. I dont have

> fatigue, muscle jerks or twitches that keep me awake at night. I

dont

> have bladder or bowel problems. I sleep like a log. I have

> overreactive reflexes and poor balance and coordination. I suffer no

> pain. My speech became slurred and unclear last year but baclofen

has

> helped that. I also take clonazepam. I have slowed swallowing and

> get the choking spasm very occasionally. I do have Pseudobulbar

> palsy. I stiffen when anxious or cold and do have increased tone in

> my muscles. I have a limp. I can zoom around with my walker for

> hours (except when I pull a groin muscle) I use no aids when walking

> in the house and can do nearly all household duties. I use a walker

> or cane outside the home because as soon as i get into an open

space,

> I panic and cannot move and get dizzy and feel i am going to fall.

I

> believe these are panic attacks. My physiotherapist tells me that I

> can walk without aids in open spaces as i walk normally when walking

> between the 2 bars. Maybe my problem is part pyshcological. I

> consulted a psychiatrist about this and asked about hypnotherapy for

> my anxiety. He was reluctant to suggest it as i do have an

underlying

> neurological disorder. I came to this message board as 4th Neuro

> suggested PLS earlier this year.

>

> So I want to ask you all, do you think I have PLS or not??

>

> thanking you

> Maureen