Looking for someone to talk to who has been diagnosed with PLS [Archive]

Arye

10-21-2006, 10:52 AM

El Penski,

My name is Arye and the reason I haven't been diagnosed with PLS is because it hasn't been 3 years since the first sign of symptoms. As Sherlock Holmes said "after every other possiblity has been exhausted, whatever is left, no matter how illogical, it has to be the answer". That's my story. Muscle spasticity in the legs and slurred speech with no lower motor neuron involvement (yet), therefore PLSl. I would like to communicate with you and maybe we can compare notes.

Sincerely,
Arye

imneps

10-30-2006, 06:54 PM

epenski@aol.com

10-30-2006, 09:05 PM

10-31-2006, 12:50 AM

Hi El. Stranger things have happened. Don't be discouraged because no one believes you. If you feel better that is fantastic. AL.

imneps

10-31-2006, 11:46 AM

I really only have pronounced development in my legs, mostly the right leg, the left side of my body is about 3-4 years behind my right side in progression (self diagnosis). I am able to walk without assistance still, but have found that using a cane is helpful, I am still trying to be active, I can still ride a bike (Although with the loss of balance I am nervous about this... no more going no-hands). I can swim as well. This summer I climbed Mt Whitney (tallest 14K peak in continental US). I used to run marathons and triathlons, but obviously am unable to compete in these, trying to figure out a way to.. I am also interested in wheelchair events, before my arms start to have the same problems that my legs do..

I started noticing that my arms are less dexterious as well (again, mostly the right side) a year or so back, but still am able to function.

There have definitely been times when I felt things were getting better, and I am that diet and exercise played a role. While the disease may not have "reversed" any stop or slowdown in progression is a huge positive.

I currently do not take any drugs for spasticity, but may soon enough.

I am frustrated that I cannot pin-point what may have caused the degeneration, was there a physical event, or simply deterioration... Is there anything in your mind that you might think "caused" the disease... ate a lot of fish with mercury, have a lot of silver fillings... you know dumb stuff, but possible causes.???

let me know if you have any questions.

jazzshampoo1

11-06-2006, 05:11 PM

I am also looking for someone to talk to who has PLS.

I have been diagnosed with PLS this summer by Doctors at Johns Hopkins U., School of Medicine. The people at the hospital seem to be used to dealing with people with more severe problems than I currently have. I feel like a round peg in a square hole.

El Penski
Hi i know how u feel a square peg after 15yrs of living with pls i am feeling more like i fit in!

nerrad

11-14-2006, 12:44 PM

Hi El. Stranger things have happened. Don't be discouraged because no one believes you. If you feel better that is fantastic. AL.

Hello Al,

Do you have any suggestions on what medicare drug plan I should be on for ALS?

jazzshampoo1

11-14-2006, 07:49 PM

Hi, I am a physical therapy student and I am currently treating a patient who was diagnosed with PLS. I am hoping to find someone who has also been diagnosed with PLS so the patient I am currently treating can have someone to talk to about PLS. I am hoping the two of you can compare symptoms and discuss coping mechanisms.

As i have already said i would like to compare symptoms and discuss coping mechanisms, i have had PLS for 15 yrs i use a chair only part of the time ie. going abroad mainly Spain we travell three time a year, we stary around 6-8 weeks each time we go. My husband and i.

11-15-2006, 01:33 AM

Hi nerrad. What country are you in. It makes a difference on what what meds and supplements that you can get. Also a health plan helps as the only drug for ALS(Rilutek) is about $700 Canadian per month. AL.

greyelk

12-22-2006, 02:31 AM

Has anyone that has been diagnosed with PLS been given any drug treatments to attempt a cure or arresting/slowing of the disease's progression? My wife was diagnosed with PLS last year by the Clevelend Clinic. They have been unwilling to do anything other than to monitor and treat the symptons versus seeking drug therepy that will slow or stop this disease. Our family doctor, though, has chosen to "try" and has been working with us with various drug treatments. We have seen some interesting results that are at least pointing us in certain directions. Would like to compare notes and see what others have done. We (including our physician) can find very little info on actual treatment. Appreciate any thoughts.....!![/B]

12-22-2006, 03:31 PM

Hi Greyelk. Welcome to the forum. The reason there isn't much information around is that sadly there isn't much being done in the drug trial field. The big drug companies openly admit that there is not a big market here so it is unprofitable to research our plight. You can check this site to see if there is anything new going on. AL.
http://www.clinicaltrials.gov/

greyelk

12-24-2006, 09:00 PM

My hope is that some of the folks that read/write into this forum have tried various treatments. I agree, very little can be found which is frustrating for my family doctor. The good news is that he is willing to "try." My wife has two brothers that are doctors who also are helpful in giving direction. What frustrates us most is that places like the Cleveland Clinic won't even try something/anything. At present, we're treating it as if it is either autoimmune or viral cause. Yes, it can be a shot in the dark but the treatments so far would strongly suggest we're going in the right direction. I'll be happy to share what we find as we move forward, but if anyone has tried anything on their end, please let me know....thank you.

SharonL

01-24-2007, 12:33 AM

Hi, I am a physical therapy student and I am currently treating a patient who was diagnosed with PLS. I am hoping to find someone who has also been diagnosed with PLS so the patient I am currently treating can have someone to talk to about PLS. I am hoping the two of you can compare symptoms and discuss coping mechanisms.

Hi; I was diagnosed with PLS in 1992 and am still walking with only the assistance of a cane. I believe the symptoms were there before that time and I was unaware of what was going on. My reply to your question is this: Keep the muscles as strong as possible. I believe every case is individual but it is important to keep the muscles strong and the joints as limber as possible. I hope this help you in treating your patient.

JACKIEMAX

02-02-2007, 10:28 AM

I was diagnosed with PLS last year at the Mayo Clinic.

I have had 5 (now 6) years of progression. I would be very interested in discussing the symptoms and anything else.

I am 36 years old / male.

look forward to discussing

Mike
mike - please share with me what has been going on with you for 5 years. what symptoms have you had all these years, how often did you get a new symptom, can you still walk, talk, feed yourself, and lead an active life? are your symptoms worse now? my husband was dx a few months ago, but his symptoms began over a year ago. i see new symptoms creeping in all the time - especially weakness of his muscles. he can barely walk, it hurts his back to stand up, move around, sit down. his voice is raspy, but you can understand him, and he can chew and swallow fine.

JACKIEMAX

02-05-2007, 06:48 PM

hi,

my name is jackiemax. i live in Tn. and it is my husband that has been diagnosed with als. he is entering his second year with it we think. i have read all of the posts following my orig. post that i wanted someone to talk to about als, and find many are saying they have pls. what is the difference.

also, joel, glad you were able to find some peace and continue in this forum. it is a real lifesaver for me, his caregiver. every post i read is different, meaning no two cases are alike.

thank all of you for your postings.

02-06-2007, 01:44 AM

http://www.alsforums.com/definitions/documents/what-is-primary-lateral-sclerosis.pdf

Hi Jackie. That site will tell you a bit about PLS. AL.

Also there is a definitions section on the front page of the forums a bit down on the left side.

Raymond B

02-17-2007, 11:24 AM

Hi. I am in somewhat the same circumstances. Would like to compare notes. Raymond B

DBowman

02-20-2007, 03:09 AM

When they finally diagnosed me with PLS in 2006 they gave me prescriptions to Rilutek and Baclofen. The Rilutek is given to both ALS and PLS patients. It is supposed to slow down the progression of the disease. They don't know HOW it works but they know it works. But the doctors don't tell you that the drug can take anywhere from 6-18 months to fully "kick in". I found this out in a well known prescription drug book and mentioned this to my pharmicist and neurologist. My pharmicist also told me not to take it too close to the otc drug Prilosec. My monthly supply costs about $845.00 here in Virginia. But with Blue Cross and Caremark it is only $25.00 to me. It is so pricey because they don't make a whole lot of it compared to other drugs. I experienced flu -like aches and fatigue when I first started taking it (twice a day) but they pretty much eased up after a few weeks. The fatigue is one of the reasons I didn't take the muscle relaxer Baclofen. The starting dose of 5 mg. isn't enough to make that much of a difference for me. My problem was with the anxiety that comes with this disease. I find that a half a tablrt of a good anti-anxiety drug as needed helps me relax mentally thus relaxing the rest of me so I am not so stiff with fear of falling (again). I only take this AS NEEDED under my doctors supervision as some anti-anxiety drugs can make you dependent on them. But you may have luck with the Baclofen. As for the emotional "incontinence" you may experience (laughing and/or crying uncontrolably) you can ask your neurologist for a prescription for a mixture of Quininine (a heart medicine) and Dextromethorofan (cough medicine)...they say it works really well ( I haven't gotten this yet but, I need it!) Quinine helps with those muscle cramps you can/will get. I rarely take Quinine but I believe that the Rilutek helps put a damper on my cramps. Some of the cramps feel like your BONES are cramping. God Bless, DBowman

Raymond B

02-21-2007, 08:33 PM

Hi Arye,

You and I are sitting in the same chair. Would like to compare notes.

Raymond B.

Jon J

02-23-2007, 02:51 PM

Medical Science is helpless against PLS and most MNDs.
My neurologist struggles to find something to say to me that he has not said before.
I am sure he wonders why I came in. On my way home I wonder why I bother.
The primary care doctor / insurance question why I request to see the neurologist.
What for?
I have had PLS for over 15 years. Begining with a jerkie right foot to now useless legs & arms. And so it goes.
I have no pain. It's not terminal. But I suffer being dependent on and a bother to other people.

02-23-2007, 04:03 PM

Hi Jon J. Welcome to the forum. Thank you for posting your feelings on PLS. While everything you say is true I am sure it still gives some semblance of hope to some of the people that have only had these conditions for a short time. Some of us want to live and have hope that if we live long enough there may be a cure or at least a treatment with some reversal of symptoms. If you are dead , there is no cure. 15 years I am sure is no picnic but the alternatives are not attractive to me.
AL.

Jon J

02-23-2007, 05:26 PM

Al,
By 2400 postings to this forum, I can guess you have helped many people to deal with their ALS/PLS troubles. That gives you purpose.
I understand the medical hopes lie in stem cell research to reverse the nerve damage.
I am not aware of any research to determine the cause. Hope is a wonderful thing.
As I said, I am most troubled by my dependency. My PLS will kill my wife before it kills me.
Tell me about your disease, ALS-PLS-Other?
Jon

02-23-2007, 05:52 PM

Hi Jon. Caregiver burnout concerns me as well and I am no where near where you are in the progression area. I have ALS and was diagnosed in Oct. 03. I am being fitted with a power chair Tuesday and am just typing with 2 fingers but my right one is just about gone. I'm getting a new on screen keyboard Tues. as well at the clinic. I have limb onset sporadic ALS with no bulbar symptoms as yet. Have you got any home care coming in to help your wife? I am sure that after so long with it you would be aware of the help available but some of us are reluctant to take it. Anyway if you have any questions or just want to shoot the breeze this is a good place for it.
AL.

Jon J

02-23-2007, 07:00 PM

Al,
I see you are in Canada.
Here (US, California) homecare is very expensive. Medicare does not cover any in-home services. Even for those on state-aid there is no in-home care. To get state-aid you must not be worth over $2000.00 and be admitted to a nursing home. So, if my wife survives to see me into a home she will be broke.
Are the on-screen keyboard and power chair provided by your medical insurance?
I understand that ALS is much worse then PLS. What do your doctors say about life expectancy?
Jon

Jon J

02-23-2007, 07:17 PM

Clinic? You have a Clinic (place) with computers to go to? How do you get there?

02-24-2007, 01:13 AM

Hi Jon. The ALS Clinic I go to has a Physical Therapy Dept with an Assistive devices clinic. I will pay about $4 per month to lease the programs. The chair is 65% funded by the Provincial Government Assistive Devices Program and if you have no private ins. the ALS Society will help with funding. Have you asked the ALSA or MDA for help? I don't believe they charge for help or look at your income. Even Hospice will sometimes offer respite care. I believe there is another organization called Helping Hands I think but am not sure if they are in Ca. I can still use a walker for a few hundred feet so am able to get into the van and wife still ferries me around. We take the manual chair if any walking is involved. The doctors say 2-5 years but admit I am a bit of a different case because I seem to be going slower than average.
So that's about it for my story for today. Take care. AL.

Jon J

02-27-2007, 09:50 PM

Al,
I have contacted PALS in San Diego. Waiting to be contacted by the Patient Services Manager. I will let you know.
How do I use this forum to learn if San Diego PALS members are on this forum?
Jon

02-28-2007, 12:02 AM

Morning Jon. Unfortunately we don't have a search feature like that on the site. I recall that we have a couple but their names escape me. Try starting a thread up in General Discussion "Looking for SD PALS" and you might get some hits. A lot of people don't put their towns in their profile which makes it hard to find information such as you are looking for.
AL.

TheRock35

05-02-2007, 04:55 PM

Hi,
I was recently diagnosed with PLS at UAMS in Little Rock, Arkansas.
My doctor told me that I had the classic signs after reviewing my MRI and going through a multitude of tests.
It started about 15 months ago with weakness in my hands. I couldn't button a shirt, or pull a zipper. I can still do most things, just don't have the fine motor skills and strength to do things like tie a shoelace. About 7 months ago I noticed my left foot drop. It made it difficult to walk, let alone run. It progressed a lot last November. When it gets cold my body becomes very rigid and I have great difficulty moving. Anxiety and stress also cause me to become very rigid or stiff. I have tremors (bounce) in both my legs if I place pressure on the right spot. For the most part, I just have difficulty walking and doing small things with my hands. I still do all things unassisted though.
It hasn't gotten any worse since November.
My doctor has placed me on Baclofen to address the spasticity but I can't really tell if it's doing anything.
Are these common symptoms for everyone else diagnosed with PLS?

CindyM

05-02-2007, 05:21 PM

Hello therock35. I am sorry you have to be here but glad you found us. You've some to the right place for support, encouragement and information. quite a few members have PLS and you should be hearing form them soon. Meanwhile, I just wanted to extend a welcome. Cindy

LindaS

06-25-2007, 08:36 PM

I was diagnosed with PLS in 1999. Like so many of you have experienced after about 1000 MRI's and lots of needles. All my images and tests were taken to Mayo Clinic in Scotsdale Arizonia. I had a diagnosis in 15 minutes. I think symptoms were sutle in 1995when I couldn't stand up from a low chair while we were on a camping trip.

My left leg is effected the most, I drag and am hyper spastic in both lower extremities. I have major balance issues that is what seems to be progressing the most. Have to slow way down. However, I do yoga like stretches every moring and am able to lay flat without spasms. I take Baclofen 20 mg per day.

I will use a walking stick when going places by myself. My dear sweet husband always walks to my right and offers me his arm for balance. This seems to help my cadance and stride(increases my steps).

I live in Southern California, would love to hear from anyone with PLS.

LindaS

manfred

07-30-2007, 08:02 PM

Hi Greyelk,There are really no drugs out there for this condition that have been approved by the F.D.A. other than rilutek..there are however oxidative stress issues related to mnd's...and there are anti-oxidants that can help slow the "progression"of this condition...not everyone agrees,but there are a lot of people out there using them with some success.(.My daughter happens to be one of them)..they may not work for everyone particularly if one is predisposed to the notion that "they can't work"..besides there's not much out there ,so if they work for you fine ...if not, then obviously there's no need to continue using them There is an "infinite" amount of info on research on this condition on the net...both research trials and their results ....from stem cell implants,genetics,anti-oxidants ,causitive issues etc.....they are put there by reputable researchers from around the world from reputable Neuro-institutes from San Diego to Taiwan..tokyo- europe etc....so don't accept the idea that there's nothing one can do ,do the research (only with reputable institutes) and come to your own conclusions...be strong ,be possitive and above all NEVER give up!Manfred

Geo

08-24-2007, 03:34 PM

HMMMMMMM Sound Familiar ??? Since 2000 for me . One Doctor out of 40 Had enough Compassion to Pat me on the shoulder and say" im really Sorry This has to be Frustrating for you . " Every Test They Have done including 5 MRIs of The Brain and Stem ,3 EMGs You Name The Test and ive had it . One of My First Docs Said You 'll Be Dead in 2 years . 7 years now . 2 years ago i had Breathing issues ,went to Emergency waited there 10 hours and Got told "we cant help you here we dont have a clue what you have "

Now I Know Why People Dont Go To Doctors
George 8)

manfred pungartnik

08-25-2007, 06:42 PM

Hi Geo, Ater all the research I have done on the net about this condition,the one thing that is certain,it will be a long time before they find a cure for this thing!The only drug approved by the F.D.A.,for "treatment" of this condition is RILUTEK( a glutamate blocker).There are however,many trials and research that were undertaken to try and find, ...the cause...a cure...short of that ...at least a treatment,in the hopes to at least slow the progression,if not halt it altogether.There is some work being done on stem cell transplants,and IGF-I,but these are also a long ways from any kind of approval.In the mean time there are many food products and supplements out there (that do not necessarily cost upwards of $600/month)There are fruits and vegetables that are helpful,anti-oxidants as well as foods that enhance the body"s own natural system for Detoxification.There is a lot of speculation that unhealthy Liver function contributes to m.n.d.s...The info is on the NET!Research,and make your own conclusions...the more you understand about this condition and some of the suspected causitive issues the better you will be able to fight it!My daughter uses rilutek,anti-oxidants,healthy diet and non-strenuous exercise(for those with swallowing problems,Papaya juice is helpful,for muscle cramps ,Vitamin -E and so on)They have been working for my daughter,so I have to go by what I see........After starting her reigmen ,she improved immensely...so given that there are other avenues out there and if I can gather this information from reliable sources(neurological institutes and research facilities throughout the world)then I am sure that the medical societies can come to the same conclusions as I..why then have only a few Doctors made these possibilities available to their patients.?Manfred

patricia1

08-25-2007, 09:16 PM

I was diagnosed with PLS this summer. I have difficulty walking and talking. Otherwise I am fine and active. I take Baclofen and Rilutek, but I am not sure if they help.

I am being treated at Johns Hopkins.

Tommorrow, I start speech therapy. I think I am getting stronger slowly, but I doubt if anyone believes me.

El Penski
Hi I never knew Upper and lower neurons are involved in PLS I started with slurred speech and noone said pls What Makes it PLS instead of ALS Thannks PAt

manfred pungartnik

08-26-2007, 08:57 PM

Hi Patricia,As I understand it only the upper motor neurons are affected in P.L.S.If lower motorneurons are affected the it is dxd as P.M.A. ,and if both are affected then the dx.,is A.L.S.Manfred

patricia1

08-26-2007, 09:39 PM

yes thats what I thought but Penski on the thread above stated he has slurred speech and cant walk I am so confused. There sometime is very conflicting answers on the web Thank Pat

hboyajian

08-27-2007, 10:23 AM

The terminology can be confusing, and I guess most doctors don't explain the different terms very well or give their patients written information that can be referred to later. My comprehension of this is limited. As I understand it, the upper motor neurons are neurons that originate in the part of the brain that is responsible for movement (the motor cortex) but do not attach directly to a muscle. Instead, they go to the spinal cord, where they connect up with other motor neurons which in turn go to various parts of the body to operate the muscles there. These neurons that connect directly to the muscles are the lower motor neurons. Signals from the brain travel through first the upper and then the lower motor neuron to the muscle to initiate movement. In ALS both parts of the neuron pathway are affected.

manfred

08-27-2007, 09:36 PM

Hi Pat,The entire concept of these conditions is MIND_BOGGLING and hard to understand,most doctors do not understand it themselves and that is why a lot of people are misdiagnosed or not diagnosed at all .You really have to see an ALS specialist (who preferably has als patients that he or she is treating)Without going into detail of my research efforts,people have been known to have speech issues (and atrophy of the tongue ) in A.L.S.,P.L.S. and P.M.A....they are however more severe in P.B.PThe sometimes confusing symptoms are what makes this condion so hard to diagnoseThats why I prefer to refer to all of these issues as motor neuron degeneration,the process is basically the same (lends to a wider spectrum of research as well )and the definitions only define the severity of the "condition"Manfred