View Full Version : Newly Diagnosed with PLS
kimsoto
01-02-2008, 02:45 PM
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 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
01-03-2008, 10:41 AM
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
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
01-03-2008, 01:08 PM
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?
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
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
01-18-2008, 11:41 AM
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
01-18-2008, 12:07 PM
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
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
01-19-2008, 08:07 AM
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
01-19-2008, 01:57 PM
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
01-21-2008, 11:50 AM
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
01-21-2008, 12:04 PM
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
01-21-2008, 01:54 PM
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!
Crystal,
Do you have clonus? Clonus can be a symtom of PLS.
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
01-22-2008, 09:52 AM
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
01-22-2008, 02:29 PM
sral,
I have a couple of beats of clonus, I think they call it unsustained.
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
01-24-2008, 04:35 PM
sral,
Thats how mine is , I don't know if it happens without anyone probing the limb.
I will try and find out.
crystalkk
01-24-2008, 04:47 PM
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).
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.
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
02-18-2008, 03:12 PM
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.
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
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
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
