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.
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.