Mike in Maine
Distinguished member
- Joined
- Oct 18, 2013
- Messages
- 244
- Reason
- PALS
- Diagnosis
- 10/2013
- Country
- US
- State
- PA, No longer live in ME
- City
- Pocono's
Let’s begin by saying I could have easily put this under the “PLS/ALS Association” thread but after much thought decided to start a new thread. As a matter of fact looking back in the pages of the PLS forum there are many threads that debate the PLS/ALS relationship question. So this is just another in a long line, expect I’d like to add my own personnel twist to it (PALS please don’t tell me to move this to DIHALS).
A little back ground before we get started, my neurologist, maybe the best in the Great State of Maine when it comes to ALS, he believes that all Motor Neuron Diseases fall onto a continuum with ALS at one end of the line and PLS at the other, and everything else falling someplace else on the line. He uses the terms so interchangeably that in the same appointment I have heard refer to my case as ALS, UMN DOM ALS, MND and PLS. As my Doctor tells me (at almost every visit),” it just a name, we treat the symptoms as they arise and we carry on. Stop getting hung up on the name”. One more data point, the Doctor I saw down at MASS General Hospital when down for my second opinion used the same scenario when explaining things. At an appointment yesterday my Doc used the following story to illustrate his point. He once had an ALS patient that came into his office with foot drop and three months later was homebound and almost locked in. He said we are both on the same road, just traveling at different speeds (May I add that I consider myself very lucky to be traveling at this speed). So I ask my Doc to put a name on what I have, his answer pick one, we’ll go with that, not the answer I was looking for!
So Shipmates (use Shipmates cause were all in the same boat), what would you call it ALS, UMN DOM ALS, PLS, MND or something I missed. I have all the signs of PLS Hyperreflexia , positive Babinsk sign, clonus, muscle fatigue, always tried could sleep 18 hours a day, El issues, voice is trashed, I have some issues swallowing and serve spasticity. If you were to rate the spasticity on a scale or 1 to 10 it would be 11 or 12, as Mike (I have PLS) says I get shortness of breath just getting dressed believed caused by the spasticity. I also have signs of LMN involvement, a dirty EMG not much, but bad enough that the VA said yup ALS here is your benefits, some muscle wasting in the left hand and calf with some weakness in both the left hand and foot (Muscle weakness and wasting have been very, very slow to develop) and I have fasciculation’s everywhere. So folks what name should I be using next to forum interest. Want to hear your opinions; I think most of you understand the why of needing a name. My Doctor is probably right, it is only name
A little back ground before we get started, my neurologist, maybe the best in the Great State of Maine when it comes to ALS, he believes that all Motor Neuron Diseases fall onto a continuum with ALS at one end of the line and PLS at the other, and everything else falling someplace else on the line. He uses the terms so interchangeably that in the same appointment I have heard refer to my case as ALS, UMN DOM ALS, MND and PLS. As my Doctor tells me (at almost every visit),” it just a name, we treat the symptoms as they arise and we carry on. Stop getting hung up on the name”. One more data point, the Doctor I saw down at MASS General Hospital when down for my second opinion used the same scenario when explaining things. At an appointment yesterday my Doc used the following story to illustrate his point. He once had an ALS patient that came into his office with foot drop and three months later was homebound and almost locked in. He said we are both on the same road, just traveling at different speeds (May I add that I consider myself very lucky to be traveling at this speed). So I ask my Doc to put a name on what I have, his answer pick one, we’ll go with that, not the answer I was looking for!
So Shipmates (use Shipmates cause were all in the same boat), what would you call it ALS, UMN DOM ALS, PLS, MND or something I missed. I have all the signs of PLS Hyperreflexia , positive Babinsk sign, clonus, muscle fatigue, always tried could sleep 18 hours a day, El issues, voice is trashed, I have some issues swallowing and serve spasticity. If you were to rate the spasticity on a scale or 1 to 10 it would be 11 or 12, as Mike (I have PLS) says I get shortness of breath just getting dressed believed caused by the spasticity. I also have signs of LMN involvement, a dirty EMG not much, but bad enough that the VA said yup ALS here is your benefits, some muscle wasting in the left hand and calf with some weakness in both the left hand and foot (Muscle weakness and wasting have been very, very slow to develop) and I have fasciculation’s everywhere. So folks what name should I be using next to forum interest. Want to hear your opinions; I think most of you understand the why of needing a name. My Doctor is probably right, it is only name