Discussions with the Doc

[Bad Balance]

A very rare individual was there in the clinic today. I did not get to meet her, but my Doctor told me she has survived for 17 years.....his one in 1500. I realized it was best not to get too excited or get my hopes too high....lol.

One interesting part of our discussion was that doctors in different parts of the world view ALS a bit differently. Apparently europeans generally are quite willing to look at upper and lower neuron presentations as different diseases represented as PLS and others towards the opposite end of the spectrum. Autopsies many times actually show the presence of both, he said.

 

[LizT]

17 years? Wow. Did you find out if she was on a vent or anything?
Ive often wondered how that works- when someone lives longer than the alotted 3-5 years... does it still "count" if that person is on a vent? Because technically they would have passed if they hadnt gone on one. So are they really beating the statistics?
Confusing, I know.
Heres to hoping that everyone here can see the 17 year mark and beyond!
thanks for sharing, Jerry.

 

[AKmom]

I think I am living in the wrong country!

 

[olly]

i we talking about surviving als for 17yrs? if so that is brilliant.
with pls text books say 20-25yrs depending on age of onset but i know many in there 60's and 70's who have had it well over 20-25yrs.

untill they fully understand all mnd's there is always going to be different opinions.
some say pls is totally seperate from als yet in autopsy studies even if no lmn signs/symptoms were evident in life they tend to find the desease process had spread to the lmn's.
if they had lived longer they would have presented more like that of als.
still i think the 3-5yr time line of developing lmn signs still stands and does still destinguish pls from als.

actually remembered on autopsy in pma umn desease has been found.

 

[Alyoop]

Liz in answer to your question about do people on vents count in the 3-5 years stats, then no, they do not. In many countries, infact most of the world, vents are not available. Therefore the 3 -5 years stands. However there are ALWAYS exceptions, miracles. I met a man who is still walking, but has 1 withered arm, who has had ALS for 15 years, now I ask the question, Did his Dr misdiagnose him?
Aly

 

[Al]

George Goodwin from als independence.com has had ALS 20 years and no vent.

AL.

 

[notme]

I've read literature that PLS often develops into ALS. Is that true?

 

[olly]

they estimate that 50% of those with probable pls within the 3-5yrs wait and see time go on to develop lmn signs....thus als.
though very rarely some have been re-diognosed als after 10+yrs.
there are some with a definate pls diognosis who do show minimal lmn signs even on emg or atrophy but not to the same extent as seen in als.........these are thought to be umn dominant als but this is not a real diognostic term therfore depending on the neuro they could be told its als or pls.

 

[AKmom]

yeah and I am working on 17th year since I first started falling and unable to kick a soccer ball or run anymore without falling (I was a soccer coach and very fit. I ran with my teams) and still they scratch their heads. They have ruled out everything but PLS and the story goes on...

 

[notme]

AKMom--have they checked for MS by any chance?

 

[AKmom]

I just went to the mayo clinic in florida at the end of March. Even the so called experts are saying they do not know what it is and that some people never get a diagnosis. But at this time, their qualifications of being able to diagnose PLS is in question due to several factors. It was stated several times by several neurologist throughout the years, that it is not MS, including these docs at mayo.

 

[Maddy]

Hi,
A gentleman in my town just passed away last week at the ripe old age of 89. He had PLS for 35 years. Below is part of his obit. I was diagnosed with PLS 4 years ago so I find this man to be quite inspiring as I know you all will too.

Thomas Lee Bushey SEA GIRT - Thomas Lee Bushey, 89, of Sea Girt, formerly of Ewing Township, NJ, died peacefully at home on May 1, with his family by his side, after a 35-year courageous battle with primary lateral sclerosis (PLS). Born in 1921, he served in the U.S. Navy in World War II from 1943 to 1946 and sailed on the USS Irwin as a lieutenant. Tom graduated from Haddonfield High School and Lehigh University-Class of 1943, where he was a member of the swim and football teams and Theta Xi fraternity. He spent his entire working career of 34 years with NJ Bell Telephone, where he made many great friends. He was a member of the Rotary and Telephone Pioneers of America. Tom loved golf, gardening and woodworking, and spent many great summers on Long Beach Island, where he met his beautiful wife, Shirley. Tom learned how to use a computer and spent hours emailing and corresponding with many old and new friends until his condition made that too difficult. He fully enjoyed his years of retirement spending winters at Ocean Village, Hutchinson Island, FL, where he met many lifelong friends. Throughout his illness, Tom maintained his sense of humor; he always had a smile for his visitors and a positive word for everyone. His battle with PLS is a testimony to his inner strengths and was an inspiration to everyone who met him. He was a wonderful and generous husband, father, grandfather and great-grandfather to all.

 

[Alyoop]

Thanks Maddy
Inspiring. Hope I am still around at 89. Actually I feel 89 already

 

[Zaphoon]

Thanks, Maddy, for the Thomas Lee Bushey post. I have a long way to go before 89 comes my way!