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

[jnewman34]

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.

 

[[email protected]]

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

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

 

[Arye]

Haven't been diagnosed as of yet.

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]

I have PLS

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

 

[[email protected]]

Pls

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

 

[Al]

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

 

[imneps]

Pls

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]

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]

prescription drug plan

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]

I have no-one to talk to, but would like to have, it sounds good to me!

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.

 

[Al]

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]

PLS Treatment

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]

 

[Al]

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]

PLS Treatment

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]

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.