Something about PLS...

[Clearwater AL]

The so often long diagnostic journey of certain MNDs can be so seemingly drawn out I can’t help but wonder sometimes if it isn’t part of some iniquitous plan. Somebody gets paid (by you or your insurance or both) for every office visit and test. For example, there is a test (I won’t mention the name or it will show up in future Threads) with findings of the Primary Motor Cortex that is a near 70% indicator of Primary Lateral Sclerosis. Many Neuros won’t order it… for some reason. It is expensive. But it can hasten the PLS requirement criteria of 3 to 5 years of exclusion and observation with some affirmation to a confirmed diagnosis sooner. (But, as many have written before, it is a ‘must’ to been seen by a Neuro who specializes MNDs to have it happen). So… why isn’t it a standard test for the presentation of Upper Motor Neuron Disease? Generally this test is ‘sometimes’ ordered after the exclusion of other possibilities. I was told there has to be significant evidence of progression before the test would be ordered. I feel mine was like the period at the end of a very long sentence that could have been much shorter. Hmmm… Is it really a matter of checking off the long list of diagnostic exclusion or… Again, just my opinion.

PS. Some Neurologists follow this Forum in their off time... sorry Docs.

 

[Cammarak]

Interesting--I've heard nothing about this test--if it really exists then it is a no brainer that docs should be doing it right away. My neuro has said almost from the beginning that he was certain that I had PLS--every physical sign was present and the tests he performed showed only upper motor neuron involvement. I still go every few months but the they never DO anything anymore--it's really just talking a lot at this point, I guess to see if there have been changes that would indicate ALS development. It would alleviate so much stress to have a test that would confirm PLS.

 

[Nikki J]

I will respect Al's wish not to name this test. The one to which I believe he refers shows upper motor neuron involvement. A positive test would indicate PLS OR ALS as we both have UMN damage. Someone with ALS also has lower motor neuron damage and an abnormal EMG which PLS people do not. Once you have PLS as a diagnosis I do not think the test would help because then the question is not PLS or not motor neuron disease, it is is it still PLS or are there now lmn signs indicating ALS

 

[Clearwater AL]

Cammarak, as you wrote, ("if it really exists..")

Yes, it does. I don't make crap up like a lot of others do.

PS. I disagree with, ("My neuro has said almost from the beginning that he was certain that I had PLS")... there is no beginning diagnosis of PLS. The Pringle et al (and others) criteria for diagnosing PLS is from 3 to 5 years of neurological exclusion and observation to reach a confirmed diagnosis of PLS.

 

[Cammarak]

Part of the point though is not having to go through years of stress--as if you're constantly waiting for the other shoe to drop here-- when you can have the test and they tell you there is more proof it's PLS--cuts out a lot of worry about what they have to say. I do know that in some cases lower motor neuron involvement can develop later. But it would have cut down on the fear I experienced going to docs for 2nd and 3rd opinions after a neurosurgeon told me I had ALS(he just meant MND but I had no way of knowing that at the time). I'd like some of those months back to relive.

 

[Cammarak]

Ha! I didn't mean you made it up--I guess it would have been better to say if it actually works!

 

[Cammarak]

Yes yes yes, Clearwater--I'm aware of your strict adherence to the 3-5 year observation period, but that doesn't mean that my board certified neuro who specializes in MND DIDN'T diagnose me "early" based on my medical records where physical symptoms had been documented for years prior to my first visit to him (by other physicians). He also said--as did other docs--the 3-5 yrs is because if it were ALS, you'd be dead in that time period. My doctor has given me a written diagnosis of PLS--last June. He had not been seeing me that long, but the symptoms had been documented for a long time before that. So if the comment about making stuff up was for me, I guess I can't imagine why you'd think someone would say they have this when they don't. I'll be munching this particular shit sandwich for the rest of my life--along with everyone else in the dining room--so what difference could the amount of time for the diagnosis possibly make to anyone ?

 

[Clearwater AL]

Whatever....

 

[Cammarak]

Ha ha--well played, worthy adversary.

 

[Clearwater AL]

I'm not playing games.

Mods... I guess it's time to close this Thread. At least it will always be here for future reference for others.

 

[Tokahfang]

Perhaps because PLS isn't a treatable option, insurances don't find the test medically necessary? I came to PLS through the HSP route, so I never ran into this issue. It was an expensive gene test that I had to wait for.

 

[Port]

Interesting thread......although I don't know why the reluctance to post the name I will respect that wish. I can seen why they don't give it....it is moderately expensive and only looks for umn disease. That does not mean one won't show a dirty emg in this 5 year time fragments so why bother? It will become self evident without the test. This is how my neuro thinks. It's similiar to doing the genetic testing for hsp. It expensive and changes nothing.

 

[Clearwater AL]

Port, the reluctance is because people read these Threads and use tests mentioned to fortify their suspicions (only) that they have ALS, PLS and other MNDs. Many go from posting symptoms, asking questions to 2 or 6 months later posting that they have been diagnosed with PLS... it don't work that way. So, I'd rather not see the name of the test, (from me) in the future, being used by people seeing an easy way into the Forum. Apparently, from some recent Threads, Pringle (and others) wasted their time establishing a criteria once respected throughout the neurological community. Medical center neuros affiliated with colleges of medicine will go with these tests for case study. If someone else wants to post the name of the test... have at it.

So, as I ended my previous reply... whatever.

 

[olly]

Al,i have known about that test for more than a decade.
It can not be used to diagnose PLS as it only shows UMN involvement when there is significant disease severity...or after many years.
I know of only 1 man who is very severely disabled who had the test and it showed up.
They need to make it stronger or more sensitive as other imaging just don't show abnormalities up in the grey matter.......its a grey area lol...sorry for pun.

 

[Clearwater AL]

Hey Ollie, no it can not be used to diagnose PLS being it's only 70% or less in some estimates but it can reaffirm a diagnosis. As you wrote of only knowing one man... it may be that way in the UK but it is becoming a more common test here. Again, medical centers here affiliated with medical colleges do it more so than an independent neurologist.

Ok, as to my trying to get those to understand that a diagnosis of PLS takes time. You don’t go from posting symptoms to seeing a Neuro to a few months later posting you have been diagnosed with PLS. I'll do something I am reluctant to but it's nothing I haven't posted before

Here’s my journey, as the Forum calls it. Maybe Pringle would appreciate it. 2008 my wife was seeing an Ortho, as we were walking down the hall he was following us. In the room he happened to ask, “And why are you limping”? I told him it seems as though my left leg is getting weaker and said, “Maybe I need to see you too.” He said, “I’ll see you… make an appointment.” (Prior to that, because I didn’t have any pain in that leg, I was shrugging it off to previous back issues or age).

During my appointment he noticed a few things I didn’t realize. Then, there was another appointment, this led to MRIs of my back. Then the next appointment he suggested that I may have Chiari Malformation Syndrome. He referred me to a brain and spine specialist. That led to an MRI of my neck and head. It was not Chiari Malformation Syndrome. He had another specialist come in who did the Babinski and Hoffman test. He referred me to a neurologist.

I saw the Neurologist for almost two and half years (endless exams – Babinski and Hoffman) before he even mentioned MND. During that time I went from hemiparesis to paraparesis. EMG and NCS tests were done. Over the course of this... three bad falls, broken ribs on one separated shoulder blade on another. Then I couldn’t breathe well sleeping flat as it moved into my trunk. I was referred to a Pulmonologist… he wrote that my breathing difficulties were neuromuscular related being that my lungs were clear, back to the Neurologist.

December 2013 the Neuro wrote it up as PLS… almost four years later. Sadly about this time my wife was diagnosed with the early onset of Alzheimers which added to the stress.

I take 90mgs of Baclofen daily… no side effects (which some will understand).
No fasciculations… which is common to PLS (which some will understand).
No pain.
Cramps and Charlie Horses… yes, but the baclofen keeps them infrequent.

I didn’t go to a GP with twitches, tingling, pain, dents or even think to look up “weak left leg” on the internet. Like many others… I didn’t even realize or suspect something like this was going on.

If anyone wants to pick this apart… have at it.