Looking for someone to talk to who has been diagnosed with PLS

[TheRock35]

I've been diagnosed with PLS

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]

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]

New Member

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]

other options

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]

You Dont Fit IN The Box I Cant Treat You

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]

meds

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]

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]

P.l.s.

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 diagnosed as P.M.A. ,and if both are affected then the diagnosed.,is A.L.S.Manfred

 

[patricia1]

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]

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]

Pls_als-pma

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