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The link Nikki gave you is a good link... it is sponsored by NINDS. Below is from the NINDS page concerning Primary Lateral Sclerosis. Just to save you from having to link on and for others...



What is Primary Lateral Sclerosis?

Primary lateral sclerosis (PLS) is a rare neuromuscular disease with slowly progressive weakness in voluntary muscle movement. PLS belongs to a group of disorders known as motor neuron diseases. PLS affects the upper motor neurons (also called corticospinal neurons) in the arms, legs, and face. It occurs when nerve cells in the motor regions of the cerebral cortex (the thin layer of cells covering the brain which is responsible for most higher level mental functions) gradually degenerate, causing movements to be slow and effortful. The disorder often affects the legs first, followed by the body, trunk, arms and hands, and, finally the bulbar muscles (muscles that control speech, swallowing, and chewing). Symptoms include weakness, muscle stiffness and spasticity, clumsiness, slowing of movement, and problems with balance and speech. PLS is more common in men than in women, with a varied gradual onset that generally occurs between ages 40 and 60. PLS progresses gradually over a number of years, or even decades. Scientists do not believe PLS has a simple hereditary cause. The diagnosis of PLS requires extensive testing to exclude other diseases. When symptoms begin, PLS may be mistaken for amyotrophic lateral sclerosis (ALS) or spastic paraplegia. Most neurologists follow an affected individual's clinical course for at least 3 to 4 years before making a diagnosis of PLS..

This is it pretty much in a nutshell.
 
I meant 335.24 /G12.29.

Dx codes shift all the time. There's no penalty to the doc for that. If a doc doesn't code realistically, the pt may miss out unnecessarily on public and private benefits, as we know.

So if someone has been told orally, "PLS" [or "ALS" or whatever] and is getting some other code on discharge, they should ask the doc to change it. Once you are in that process, you are ineligible for any medically-underwritten life insurance anyway, regardless of coding.

Often, clinics will code MND throughout a 2nd opinion process, because it has, after all, been diagnosed by another doc, and so there isn't any better code to use, unless at some point there is. That applies to second opinions throughout medicine.

Sorry to hijack your thread, J. The discharge summary you have is appropriate. Sounds like things are on the right track for you two. Stop in/pipe up any time!
 
Laurie, you now have the last word on the subject. I'll stand by what I posted. You've got two emblems on your profile, Forum Moderator and Forum Supporter. I have donated cash to this Forum twice... just for note. Again, you now have the last word.

Ok, onto my reply,

I’d like to add, if anyone went to the NINDS web site that I mentioned in my previous post concerning Primary Lateral Sclerosis… in one of their paragraphs they used the word ‘atrophy’

I cringed when I saw that last night. Not really (my opinion). Muscle loss to a very noticeable observation... yes! Atrophy is a quick word to use rather than muscles loss… I guess. Its usage could be for further debate. It would be interesting.

I avoid using medical terminology here… that word in relationship to PLS could trigger a lot of misconception. Atrophy from ALS manifests from a different source of cause. It’s that EMG thing so often written about to affirm a diagnosis of ALS. Anywhooo....

JDG222, you can also see that this Forum can be a little lively too. :) As Laurie wrote above, stop in... pipe up! :)
 
Four years before conversion seems accurate to me personally I had been given a dx of pls, and then I have had 3 emgs and at my last clinic visit there were obvious signs of both umn and lmn my results from the speech pathologist and pulmonologist had alot of change from the visit in October. I have not been told that I now have changed to als but I am now going in every month. I don't know what the numbers are for conversion from pls to als but I had my first symptoms in 2012 so 4 years later here we are.
 
My neuro told me 90+ % of ALS patients show LMN symptoms at 5 years. I have Bulbar PLS and was diagnosed after 2 years. Bulbar ALS progresses quickly and I was told I would be near death if I had ALS. Some neuros wait the full 5 years and some give a PLS diagnosis with less time. I've been told misdiagnosis of PLS could be as high as 30%. This was a conference on PLS.
 
What conference was this? Do you know if it occurs on an annual basis?
 
Bill- can you also clarify what you mean by misdiagnosis of PLS being as high as 30%? Do you mean 30% of people who are diagnosed with PLS actually have something else (ALS)?

many thanks
 
Fiona, Bill is apparently off line (internet). Onset Bulbar PLS is the most complicated PLS and it takes a very skilled Neurologist to get it right because... there is Progressive Bulbar Palsy and Pseudobulbar Palsy, all three hard to distinguish which is which. The onset of Bulbar Primary Lateral Sclerosis is kind of outside of the familiar onset window of PLS. Bill's "30%" may apply to those who have onset Bulbar Primary Lateral Sclerosis.

PS. To your Thread concerning night time breathing issues...here's an inexpensive try. You can buy 6" risers (black plastic cupped square blocks from Wal-Mart ) to put under the head legs of your bed. Also. just for your side of the bed you can buy wedge pillows to put in between the box springs and the mattress. A small narrow long pillow (or a rolled towel) between the mattress and the mattress cover (sheet) placed just below your hips (butt... no other way to say it) will keep you from sliding down.
 
Based on the studies I linked earlier, 30% would be low. Of course, in ex-US studies, the pts are often just told "MND" with modifiers like "UMN only for now." So you have to take initial patterns of diagnosis into account when you talk about "error rates." And again, it can only be a provisional diagnosis given the high percentage of reassessment as ALS. The good news is, going from PLS to UMN-dominant ALS generally puts you into a slower progression group than more typical ALS.
 
I watched a webinar on PLS and the question was how many people have PLS. I think the answer was around 1500 people in the US but he qualified it by saying people are often misdiagnosed with PLS and they really have ALS. He gave the percentage as 30% so it wasn't related to Bulbar PLS. I would agree that Bulbar PLS is hard to diagnose. They had to rule out MS, MG then Kennedy's and some others. But it still only took 2 years to rule it PLS.
 
Bill, there's nothing fortunate in any of this but... being that you were diagnosed in 2005 let's hope you continue to defy statistics, studies and any other published/posted projections. :)
 
Hi Bill - what conference was it that you attended? I would be interested in educational opportunties.
 
It may have been this webinar and the question was mailed out later or it was one earlier and I can't find a link to it.
 
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