Status
Not open for further replies.

kimsoto

Member
Joined
Jan 2, 2008
Messages
10
Reason
DX UMND/PLS
Diagnosis
11/2007
Country
US
State
Florida
City
Miramar
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.
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Hi Kim . By lower involvement what specifically ? Symptoms I.E speech first, legs first , Atrophy of muscle ? Have your husband or someone hold up two fingers ,you squeeze them as hard as you can . this will show if your weak . The person doing this preferably husband ,this should be done once a week to check for any weakness , Next push your tongue against the right cheek (pushing the cheek out ) have this person push the cheek in ,you are to hold it out , if your weak you will not be able to hold that cheek out ,same on other side . Next have someone stand behind you,squat down and stand back up ,this person is top make sure you dont fall back or forward . this person should try and not hold you, this will be to test balance . The first 2-3 years are not going to be fun Lots of tests lots of Probable progression . I had the same and was told 8 years ago i wouldnt make 2 years . after 5 yrs they say your in the clear , mine started Bulbar (speech ) then the legs . I went and had Vital Stim Therapy which helped my swallowing . then i bought my own TENS EMS machine . No miracles just seems to help . Im seeing more and more Younger folks with this ,Normal 50 + You can read my other posts here which may help . In another group i was in a 34 year old women . You are at a good place for info sharing . Geo
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
Geo I dont think the test you mentioned is positive for PLS only I am positive to all those test and Ihave ALS. Those test are used for all MND .Pat
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
Patricia,

When you say you tested positive to all those tests, does that mean that you observed the weakness? Besides a physical exam, an EMG is one very good way to determine whether it is ALS or PLS that you have. The EMG can detect lower motor neuron damage.
 

kimsoto

Member
Joined
Jan 2, 2008
Messages
10
Reason
DX UMND/PLS
Diagnosis
11/2007
Country
US
State
Florida
City
Miramar
Hi Geo. Thanks for responding so quickly. I have read several of your other posts and you seem very knowlegeable. What I meant by lower was lower motor nueron involvement. My symptoms are mostly in my legs, it started with stiffness which has gotten worse over the last year then muscle spasms in my legs. At this point my speech is fine except when I am very tired I find myself slurring slightly. I will try the tests you recommended. As for the squatting down, I can go down but not enough strength to get back up without support. Lately my balance seems to be off at least I feel like it is.
My grandfather died from ALS, so there is a history of it in our family, which is what I am afraid of. The only advise my doc had for me was to stay active, get plenty of exercise and eat a high protein diet. Also taking Tizanidine, about 10 - 14 mg daily. Do you have any other suggestions?
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Hi Kim .there is a Familial form ,yes ive read of that .Im of the belief that educate your self because our doctors are not god and our disease is very very rare, im thinking 2000 in Us which has 2oo million . You mentioned you cant get back up without support , im the same if i grab something sturdy i can pull myself up
this means theres no real weakness as i can pull my own weight up .Try this one . kneel down and holding on to something come back up ,try both legs first the right then the left . now try this using first the right hand to pull up then the left . this will tell you which side you can depend on . Im right handed and i have found my right side is worse than the left . but a crazy thing im kind of what i call mixed because i can do some things better with the left leg and not the right. These are ways to find out where your strengths are . You might also look into Multifocal Motor Neuropathy or CIDP ,MG ,Spastic Paralgia . another test is sit down and put your hands on your lap ,now take the right hand and try to flip it over and over from top to bottom and back see how fast you can go then the left hand . this will tell the speed of the signal from your brain to your hand . If this speed is significantly reduced then Motor Neurons are affected . Have someone else that isnt sick do this and check their speed . also knocking on a table will show this see how fast you can go . An EMG is the test ,this is not a pleasent test but will show the difference between ALS and PLS . Im very active I work in my yard everyday if weather permits i also shoot pool . I highly recommend living in a warm climate if you can and get lots of Sun when possible even if its just sitting in the Sun . Itook Tizannadine ,was the only thing i can take ,but it makes me feel like rubber i even cut my dose down so i quit . i also have Osteopenia and other health issues as we all do ,ive been told dont let any of the other health issues get away from you or you will have problems on top of problems . Geo
 

AAA

Member
Joined
Feb 14, 2007
Messages
11
Reason
Lost a loved one
Diagnosis
11/2009
Country
US
State
AZ
City
Anthem
Similarities

Hi Kim. I'm Angie. At this point we have a few things in common. I'm 41 and a mother of two, male 20 and female 14. My maternal grandmother died from ALS when in her eighties.
After four years, I still don't have a diagnosis. I think it's PLS. I'm fortunate to live in a warm climate. Today was cold. 32 degrees in the AM. Warming to 70 on the back wall of my house. The heat makes a big difference. I have more mobility and a lot less pain.

My EMG was normal. Very frustrating!
I can't scrub dishes anymore because I can't grip anything in my left hand. Can't drive for the same reason. Can't groom the dogs. I'm hoping this subsides during the warmer weather.

Nice to meet you.
Angie

Geo, You are very informative and I have not read all of your posts. So I'm going to go through them and read what you had to say. I'm hoping for some insight as to what to do next. I wish we could have a larger profile page.
Which Mayo clinic did you go to?
 

kimsoto

Member
Joined
Jan 2, 2008
Messages
10
Reason
DX UMND/PLS
Diagnosis
11/2007
Country
US
State
Florida
City
Miramar
Hi Angie, it is very nice to meet you too. My daughters are 15 and 9 and it's scary for the younger one because I can't do all the things her friends moms can do and she doesn't know why. My older one she knows what is going on so she helps out a lot. My paternal grandfather died of ALS in his seventies. I agree the warmer weather is better because a couple of weeks ago it got down in the low thirties I had one of the worst days yet. Fortunately my upper body has not been affected yet, but the stiffness in my legs and my balance are getting worse. My nuero recently had me start physical therapy and that helps. Have you done any PT?

Nice to meet you
Kim
 

kimsoto

Member
Joined
Jan 2, 2008
Messages
10
Reason
DX UMND/PLS
Diagnosis
11/2007
Country
US
State
Florida
City
Miramar
Hi Angie, it is nice to meet you too. My daughters are 15 and 9. This is hard for my younger one, she doesn't understand why mom can't do the things her friends moms can, my older one she knows what is going on and she helps quite a bit. My paternal grandfather died of ALS in his early seventies. So far it is just my legs that are affected and believe me I know what you mean about the weather, a couple of weeks ago is was in the low 30's and I had one of my worst days. Went to my neuro last week and he started me on Physical Therapy and so far it seems to be helping with the stiffness and the balance issues so we'll see how that works out. Have you done any physical therapy on your hand? Are you considering the Mayo Clinic? Nice to meet you, Kim
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
Hi Kim,

My mom has been diagnosed with PLS as well. She is now experiencing the same symptoms you are with her legs. And unfortunately, it seems to be moving quick. How long ago did your symptoms in your legs start? Is there anything you find helps?
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
kimsoto,

I am sorry for what you are going through, How long have you had your symtoms? How brisk are your reflexes? do you have clonus?
Were you diagnosed by a ALS specialist? I have had symtoms for about 18months now
showing all upper motor some lower motor but not nothing showing on emg. Everything else ruled out.
As soon as they do the emg they tell me I do not have mnd. sounds great but symtoms continuing to get worse. That's why I am courious about your PLS diagnoise and how long your symtoms have been going on.
 

Katie Mae

New member
Joined
Jan 17, 2008
Messages
1
Reason
DX UMND/PLS
Diagnosis
02/2007
Country
US
State
Michigan
City
Jenison
New to the site

I'm new to all of this. I was diagnosed 1 yr ago with PLS. (It was a guess by my neurologist.) Went to MSU in Ann Arbor, MI and they stated they were not sure if it was PLS. It could possibly be in it's early stages, but felt the problems I was having would be just the way I aged. I have been diagnosed, again, just last week, by my family MD, that it is PLS. I have been to doctors so often since July of 2002. I was diagnosed with trigemenal neurolgia, parathesis, clonus, hyper-reflexia, advanced osteoporosis, migraines, depression, sleep apnea, GERD and high blood pressure. I thinks thats all. I have been tested for Lupus, ALS - 3x's, MS, HIV-AIDS, Lime disease, STD's, Thyroid, Diabetes, fibromyalgia, etc. All have come back negative. My legs are getting weaker and my torso has been so painfully lately. I'm back on neurontine to see if it can control the burning sensation and muscle pain in my torso. I am getting so sick of sitting in Doctor's offices. Any advice? I am 53 yrs. old and not ready to just recline in a chair for the rest of my life.
 

kimsoto

Member
Joined
Jan 2, 2008
Messages
10
Reason
DX UMND/PLS
Diagnosis
11/2007
Country
US
State
Florida
City
Miramar
Hi sral, sorry to hear about your mom. My symtoms started about 2 years ago. As for help, I'm just now finding the physical therapy stretches seem to be helping and also my doc increased my zanaflex from 12 to 24 mg/day, I think the combination is working well right now. Have your mom ask her doctor about physical therapy, I was very skeptical at first but I have had 5 sessions and I already feel the difference.
 

kimsoto

Member
Joined
Jan 2, 2008
Messages
10
Reason
DX UMND/PLS
Diagnosis
11/2007
Country
US
State
Florida
City
Miramar
crystalkk,

I'm sorry for what you are going thru. I was finally diagnosed by a doctor who specializes in motor nueron diseases at the Cleveland Clinic here in Florida, I have been having symptoms for about 2 years, been seeing a nuerologist for about 15 months. I don't know how brisk my reflexes are other than "very brisk", no clonus.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
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!
 
Status
Not open for further replies.
Top