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IhavePLS

Distinguished member
Joined
Apr 17, 2011
Messages
279
Reason
DX UMND/PLS
Diagnosis
12/2010
Country
US
State
Pennsylvania
City
SW
Hello to all,

It's the strangest of things, actually...in another thread in the PLS forum, Mike from Maine raised the issue of UMN-Dominant ALS, asking whether PLS and ALS are part of a continuum -- or if they are separate diseases.

After all of my postings in that thread (admittedly, I do not know whether ALS and PLS are part of a continuum, or whether PLS is truly a less aggressive form/variant of ALS -- only God knows for sure), only yesterday was I taken aback when I asked my present neurologist for his summary office visit notes: Diagnosis: Myelopathy.

The reason? Well....I was initially diagnosed by the first neurologist I was referred to as having "Progressive Spastic Paraplegia" -- later followed by a diagnosis of "Primary Lateral Sclerosis" in 2010, and in July of this year, after seeking a second opinion of a "renowned" (***) neuromuscular specialist (one that Cleveland Clinic advised that I see) as "PLS" or "HSP" (the latter doubtful because of lack of familial history).

Yesterday, I sent my neurologist a memo indicating my concerns over the vague diagnosis of "myelopathy" - when others have clearly stated that I have PLS. Tonight, my neurologist called me, saying "Mike, you have a problem with the spinal cord." My response: "Yes, but it is not really with my BRAIN, given my symptoms?" He responded with: "I cannot say for sure."

Wow! I can only interpret all of this as: "Mike, if you truly have a spinal cord lesion, you may have ALS; therefore, I am reticent to diagnose you with PLS (or even HSP)"...

I think this underscores Mike's most recent post that whether or not you are diagnosed is dependent upon the propensity to which your neuro is willing to "take a risk" and render a definitive diagnosis.

And that, my good friends, is the answer for all of us: No one REALLY knows.....not the scientists, not the neurologists, nor any of us who experience any of this...only God above us knows for sure (***).

Blessings to all,

Mike

*** That no one seems to know for certain happens to be precisely why I use the term "renowned" above so loosely.. :-? Neurologists are like T.V. weathermen (or weatherpersons) in the sense that they really don't NEED to give an accurate accounting of ANYTHING.
 
I'm beginning to believe it may not be the neurologist him/herself but the firm they work for. (Unless they have their own private office.) Most work for a "group" "associates" or for the right word that fails me right now... "a company". The "company" has a policy of, "We make no definitive diagnosis of PLS or any questionable MND. Let them (patients) get someone else to make that call." So, without telling you the truth... the neurologist knows you have PLS but his/her hands are tied. The worst "company" for that on the face of the earth? The Veterans Administration.

(The "company" has it's hand over the neurologists mouth and their hand on his wallet.)

Where did all this begin? HMOs.
 
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One day I asked my neurologist why out of all the medical fields he selected this one, you never seem to be able to deliver really good news and many times you have to deliver the worst of news. He didn’t have an answer he just shook his head. When I was in the Navy I did electronic system repair, it was easy when it followed the flow chart, find the fault fix the system, look like a hero. But if the fault didn’t follow the flow chart you could end up chasing your tail and running around in circles the whole time the Commanding Officer asking if it is fixed yet. My neurologist, sends me for tests they come back not normal, but not with the result he expected, so he ends up chasing his tail and I keep asking (with less patience each time) is it fixed yet. I think that is just the way PLS is! There is no flow chart, no neat little box it all fits into. I not too sure there really is an answer.

By the way I’m developing a real love /hate relationship with Baclofen, but that is for another time.
 
Thank you both for your replies. Agree with everything you've both said. My neurologist works alone in private practice. He's actually very thorough, and I'm sure he has his reasons for why he is doing what he is doing. I'm still taken aback by his reference to spinal cord - which implies lower motor neuron -- while all of my symptoms point only to upper motor (brain - primary motor cortex). The only finding that has not is that of scattered fasciculations.

Neurology is a odd discipline. Very odd. :wink:

Mike, if baclofen does not work for you (even higher dosages), you may want to ask for tizanidine (Zanaflex). With Zanaflex, you really have to be careful about liver toxicity, however. In fact, Zanaflex - even low dose - sent my liver enzymes sky-high....they were over 30 times the norm.

Mike
 
Maybe... just maybe here's another scenario with possibilities...

The Big City Neurological Associates next quarter board meeting goes like this…

“OK, concerning our Blue Cross Blue Shield patients, next quarter we could
probably diagnose two patients with ALS and maybe one with PLS without
having Blue Cross Blue Shield pull us.” Any patients with HealthSouth…
we need to stay below those numbers or they may pull us too. The newer patients
for both we’ll try and squeeze into next quarter or next year.”

Some may read this and say that’s bunch of crap! Really? Think about it. Yes, I am
a little suspicious of the new insurance/healthcare world we live in now.
 
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My experience with Neurologists was that a week after they ran nerve tests I was diagnosed and right after running the tests he said that there was a distinct difference between my left side and my right. Thus it may not be who they work for but, instead how difficult it is to diagnose what is actually going on.
 
First, sorry that you received a bad news diagnosis. Your case, as you wrote, was undeniable. I didn't mean to imply "all" neurologists have their hands tied. But, the many posts I have read here makes me wonder about many others though. You're right... I also realize that MNDs are very hard to diagnose. Again though, sometimes you got to wonder reading the long horrible struggle many are going through without a definite diagnosis.
 
My 2 cents worth--I think the medical world just doesn't really know much or understand much about the brain and nervous system but they like to pretend they do. So Neurologists are one of the most highly paid and difficult specialties and yet so often they seem like doctors from the 1700's.
 
Sorry to hear you guys had to go through all of that. It was the complete opposite for me. My neurologist diagnosed me with PLS right away after a battery of test and he's in private practice. As a precaution he sent me to Dr. Stanley Appel (expert in ALS/PLS) in the Houston Medical Center for a second opinion. Dr. Appel diagnosed me with PLS in three days.
 
The Big City Neurological Associates next quarter board meeting goes like this…

“OK, concerning our Blue Cross Blue Shield patients, next quarter we could
probably diagnose two patients with ALS and maybe one with PLS without
having Blue Cross Blue Shield pull us.” Any patients with HealthSouth…
we need to stay below those numbers or they may pull us too. The newer patients
for both we’ll try and squeeze into next quarter or next year.”

LOL! :)
 
Thank you to all.

While there is much "science" in neurology, there is also just as much "guess work."

Very (very) sad, but also very true.

Let's face the truth: Our God is far smarter than any scientist, any researcher, any neurologist, any one of us. In the end, we simply don't know what we don't know.

Mike
 
Mike, my previous posts were nothing more than "wonderings"... I mean sometimes ya gotta wonder what may go on behind closed doors in this new money driven world we live in. :) I should have inserted some smiley faces. Bet I got a few folks "wondering" themselves though. :)
 
Yes, it is so annoying when they end each dial conversation with " but we cannot rule out ALS "
I guess it's difficult to deliver the news of a fatal disease. The diagnosis is also one of eliminating things. They spent two months looking at MRI's of my spine
 
I was just coming here with the same kind of thought. I'm just getting so frustrated with the run around. Neuro says at one appointment he is very concerned, and we've gone through all the tests he can come up with, all ending perfectly normal. My appointment this week, he won't talk about it. Says it must be fibromyalgia and wants me to get a sleep study, he thinks I must have sleep apnea and I'll have more energy. Ok fine, I'll do the sleep study, I mean, it can't hurt, right? But, when I ask him about the "white elephant in the room" he just says he's going to try to get my energy level up and pushes me out the door.

So basically he went from being very concerned last visit, to putting it all on a sleep study this visit. Not sure how he thinks sleep apnea can cause UMN damage, but whatever...

Basically I think I have him stumped and he doesn't know what to do next. Doesn't have a nice little box to put me in for diagnosis yet, so he is just hoping it will go away or something.

I realize these things are hard to diagnose, but when you've crossed everything else off the list and only PLS is left, then just go with it. At least we could stop this limbo business.
 
Did I mention that it took 17 years and literally hundreds of thousands out of pocket money for me to even hear the first mutterings of PLS? I have lost all faith in the medical community. Thus once I got two docs to say PLS and one of them provides my meds, that's good enough for me. I have a name and so far, 21+ years into it, it hasn't killed me . So life is there for me to live with what I have or don't have. I do not go to docs anymore, as long as my gp keeps my meds filled to keep me as active as possible.

It's all a guessing game to the docs. I was a guinea pig for many years with docs scratching their heads and giving me miss diagnosis after missed diagnosis, always changing their minds after treatments failed to improve anything and symptoms keep progressing. Anyway..I keep on living.

God willing.
 
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