Piedoctor
Member
- Joined
- Apr 15, 2015
- Messages
- 11
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- TX
- City
- Dallas
First, here is a link to my previous thread here: https://www.alsforums.com/forum/do-i-have-als-als/28732-new-forum.html. I was off the forum for a year, so it closed down.
Quick background - after noticing some symptoms in late 2014/early 2015, I was referred to a neuro and had an EMG done in April 2015. Clean. My wife and I then moved to Kansas, where, after the initial symptoms did not abate and new ones started, I was referred to the KU ALS clinic. I was seen there by the head of the clinic and an EMG performed by the head of the department. Referral was for a bulbar eval, EMG was performed on both arms, and NCV on my right arm and leg. Again, clean and the neuro was unconcerned. Follow-up in May 2016 with now a new department head (old one left), still no concerns. Obviously hugely relieved and moved on.
March of this year I noticed some clumsiness and weakness in my right hand - difficulty holding every day objects, manipulating small tools. I didn't think much of it, but the weakness spread into my biceps and then my left hand in the course of a month as well as a cascade of other symptoms (below). I just went to my new GP (my wife and I have moved again) and he noted bi-lateral thenar weakness (noted in pinch test) and atrophy, as well as weakness in the right biceps and shoulder/back, as well as slight right leg foot drop with some hyper-reflexiveness in the right leg. He also noted fasiculations in my back, arms, calves, thighs, and hands. He had my file and I shared my previous medical history with him, and he has now referred me to the ALS clinic here where we live. I have that appointment in a month. Not entirely sure if that is due to history, exam, or combination.
Given what I have read, it would seem highly improbable for this length of time to have passed from first noticed symptoms, so I had some questions - and obviously my initial fears of ALS are back given his referral.
My second GP (in Kansas) referred my for a bulbar evaluation - given the NOV 15 and MAY 16 exams mainly focused on the limbs, and the NOV 15 EMG/NCV was on the right limbs, could this have been bulbar all along now showing more obviously in the limbs?
Would it be possible for ALS to be sub-clinical from some of the best in the business last year (with an EMG 15 months ago), but now manifesting clinically?
Can age (38) and general fitness (elite athlete) make the early stages of diagnosis more challenging? Again, the neuros at KU in Nov 2015 and May 2016 were not at all concerned.
Can ALS symptoms progress so slowly so as to almost not even be noticeable for almost a year? Almost as if it was dormant.
Finally, over the past three years, my symptoms seem to come on in a cluster with rapid worsening across a number of areas with usually a new area affected, and then stabilize for some time. Has anyone else had that experience?
Thank you all so much for all your time.
Quick background - after noticing some symptoms in late 2014/early 2015, I was referred to a neuro and had an EMG done in April 2015. Clean. My wife and I then moved to Kansas, where, after the initial symptoms did not abate and new ones started, I was referred to the KU ALS clinic. I was seen there by the head of the clinic and an EMG performed by the head of the department. Referral was for a bulbar eval, EMG was performed on both arms, and NCV on my right arm and leg. Again, clean and the neuro was unconcerned. Follow-up in May 2016 with now a new department head (old one left), still no concerns. Obviously hugely relieved and moved on.
March of this year I noticed some clumsiness and weakness in my right hand - difficulty holding every day objects, manipulating small tools. I didn't think much of it, but the weakness spread into my biceps and then my left hand in the course of a month as well as a cascade of other symptoms (below). I just went to my new GP (my wife and I have moved again) and he noted bi-lateral thenar weakness (noted in pinch test) and atrophy, as well as weakness in the right biceps and shoulder/back, as well as slight right leg foot drop with some hyper-reflexiveness in the right leg. He also noted fasiculations in my back, arms, calves, thighs, and hands. He had my file and I shared my previous medical history with him, and he has now referred me to the ALS clinic here where we live. I have that appointment in a month. Not entirely sure if that is due to history, exam, or combination.
Given what I have read, it would seem highly improbable for this length of time to have passed from first noticed symptoms, so I had some questions - and obviously my initial fears of ALS are back given his referral.
My second GP (in Kansas) referred my for a bulbar evaluation - given the NOV 15 and MAY 16 exams mainly focused on the limbs, and the NOV 15 EMG/NCV was on the right limbs, could this have been bulbar all along now showing more obviously in the limbs?
Would it be possible for ALS to be sub-clinical from some of the best in the business last year (with an EMG 15 months ago), but now manifesting clinically?
Can age (38) and general fitness (elite athlete) make the early stages of diagnosis more challenging? Again, the neuros at KU in Nov 2015 and May 2016 were not at all concerned.
Can ALS symptoms progress so slowly so as to almost not even be noticeable for almost a year? Almost as if it was dormant.
Finally, over the past three years, my symptoms seem to come on in a cluster with rapid worsening across a number of areas with usually a new area affected, and then stabilize for some time. Has anyone else had that experience?
Thank you all so much for all your time.