lydia
Senior member
- Joined
- Jan 25, 2007
- Messages
- 682
- Country
- US
- State
- ny
- City
- buffalo
Hello,
I have been lurking for awhile, observing my symptoms and basically biding my time until visiting GP and what I knew was the inevitable referral to the neuro. Went to neuro, who after only probably 15 minutes, referred me for a boat load of blood tests, MRI, EMG, NCV and Brain SPECT. Neuro, like GP, made comments about the possibility of Parkinson's during office visit. For some irrational reason I am intimidated by doctors and can't hold an intelligent conversation with them; in fact these visits were my first to any in 15 years (but that is another story). Getting myself in the door was a big deal, actually holding a conversation was just too much...Anyway, I didn't ask anything, and when both brought up PD I basically replied "oh, ok" and felt relatively relieved that I had apparently dodged the ALS bullet (even though I know, what does one visit actually accomplish...and what doctor is going to bring ALS up in the first visit anyways...even though they both DID bring up another nasty diagnosis...and can you believe I didn't know Parkinson's was a BAD thing ...what planet do I live on?)
A few weeks after visiting the neuro I requested a copy of her report to my GP and read the following: "Differential diagnoses would include the possibility of early onset parkinsonism, motor neuron disease, versus muscular disorder" so maybe I haven't dodged that bullet after all. So I have a few questions and would welcome any and all responses:
1) why does she use the word "versus"...? Is she using it like the word NOT? Is she using it like the word OR? I understand that differential diagnosis means a work in progress, with constant revisions and polishing as more clues come in to narrow down possibilities or open up new ones...but why not just use the word OR? To me, when I read her sentence, I interpret it as her leaning towards ALS and PD and not towards some other muscular disorder. What do you think? And I know, I should be a big girl and just call and ASK her myself but I don't...I just speculate all day long. About minutia.
2) I had an EMG of left foot and hand, and it seemed he went up the leg and arm a little in doing so. It was completely normal. (Big sigh of relief) But he took maybe 15 minutes doing the exam. Seemed short to me. I have heard on this forum that EMGs can change with time, but given that I have had widespread twitching since January 2007, AND widespread and sustained cramping, soreness, and stiffness since January 2008 AND neuro confirmed weakness on left-side....if my EMG STILL looked good after all of that, would you agree that it is unlikely the EMG will change for the worse in the future? I do have some neuro confirmed atrophy on left ankle region and left forearm & hand.
3) Anyone familiar with the use of SPECT for useful information in diagnosing or ruling out ALS? It looks like it might be useful for differentiating ALS w/dementia from ALS without dementia, but I can't make sense of anything else otherwise. I know for PD it can provide insight into dopamine levels...
Other than the symptoms described above, the neuro found: brisk DTRs, slight pronator drift (sp?), completely absent plantar reflex (neither foot even wiggled), left hand incoordination (when you flip your hands up and down repeatedly). MRI without contrast of brain normal. NCV normal. I am assuming blood tests were normal...they don't call if they are normal and I haven't heard anything. I have issues with tripping while walking, especially going up stairs. Problems typing, using knife & fork, dropping things.
I have been devouring all relevant forums on the internet and I have to say this is the most active and welcoming of all that I have visited. I look forward to any input...
Lydia
I have been lurking for awhile, observing my symptoms and basically biding my time until visiting GP and what I knew was the inevitable referral to the neuro. Went to neuro, who after only probably 15 minutes, referred me for a boat load of blood tests, MRI, EMG, NCV and Brain SPECT. Neuro, like GP, made comments about the possibility of Parkinson's during office visit. For some irrational reason I am intimidated by doctors and can't hold an intelligent conversation with them; in fact these visits were my first to any in 15 years (but that is another story). Getting myself in the door was a big deal, actually holding a conversation was just too much...Anyway, I didn't ask anything, and when both brought up PD I basically replied "oh, ok" and felt relatively relieved that I had apparently dodged the ALS bullet (even though I know, what does one visit actually accomplish...and what doctor is going to bring ALS up in the first visit anyways...even though they both DID bring up another nasty diagnosis...and can you believe I didn't know Parkinson's was a BAD thing ...what planet do I live on?)
A few weeks after visiting the neuro I requested a copy of her report to my GP and read the following: "Differential diagnoses would include the possibility of early onset parkinsonism, motor neuron disease, versus muscular disorder" so maybe I haven't dodged that bullet after all. So I have a few questions and would welcome any and all responses:
1) why does she use the word "versus"...? Is she using it like the word NOT? Is she using it like the word OR? I understand that differential diagnosis means a work in progress, with constant revisions and polishing as more clues come in to narrow down possibilities or open up new ones...but why not just use the word OR? To me, when I read her sentence, I interpret it as her leaning towards ALS and PD and not towards some other muscular disorder. What do you think? And I know, I should be a big girl and just call and ASK her myself but I don't...I just speculate all day long. About minutia.
2) I had an EMG of left foot and hand, and it seemed he went up the leg and arm a little in doing so. It was completely normal. (Big sigh of relief) But he took maybe 15 minutes doing the exam. Seemed short to me. I have heard on this forum that EMGs can change with time, but given that I have had widespread twitching since January 2007, AND widespread and sustained cramping, soreness, and stiffness since January 2008 AND neuro confirmed weakness on left-side....if my EMG STILL looked good after all of that, would you agree that it is unlikely the EMG will change for the worse in the future? I do have some neuro confirmed atrophy on left ankle region and left forearm & hand.
3) Anyone familiar with the use of SPECT for useful information in diagnosing or ruling out ALS? It looks like it might be useful for differentiating ALS w/dementia from ALS without dementia, but I can't make sense of anything else otherwise. I know for PD it can provide insight into dopamine levels...
Other than the symptoms described above, the neuro found: brisk DTRs, slight pronator drift (sp?), completely absent plantar reflex (neither foot even wiggled), left hand incoordination (when you flip your hands up and down repeatedly). MRI without contrast of brain normal. NCV normal. I am assuming blood tests were normal...they don't call if they are normal and I haven't heard anything. I have issues with tripping while walking, especially going up stairs. Problems typing, using knife & fork, dropping things.
I have been devouring all relevant forums on the internet and I have to say this is the most active and welcoming of all that I have visited. I look forward to any input...
Lydia