Inventor
Distinguished member
- Joined
- Aug 10, 2012
- Messages
- 204
- Reason
- PALS
- Diagnosis
- 12/2012
- Country
- FI
- State
- Southern Finland
- City
- Espoo
New here, have been lurking for about a year, however. 38 year old male, no health problems prior to the one I'm going through at the moment:
My symptoms started as weakness during long typing sessions in Dec 2010, and until Jun 2011 presented as something you would expect in CTS (wrist drop, cramps when turning the wrist downwards). In June 2011, fasciculations started simultaneously in both hands, arms & shoulders and have continued ever since.
By August 2011 I had trouble using my left hand (loss of finger movement & wrist straightening).
The situation developed quite slowly - thenar atrophy became obvious around March 2012 without much loss of function as compared to the situation in September 2011. By that time the right hand had remained fully operational in spite of continuos fasciculations. Since June 2012, the strength in the right wrist and thumb have clearly started to decrease. Can't hold a power drill with one hand any more etc.
I had my first EMG & NCV in June 2012. Widespread unit loss in both upper extremities, fasciculations, polyphasy. NCV normal, but distal latencies in hand motor nerves prolonged. No conduction blocks found. Diagnosis "root level damage, MND can't be ruled out". In addition to hands, one leg was tested with normal EMG. Clinical tests documented the obvious weakness. Reflexes & Babinski were inconclusive. In addition to the weakness, there's a point of pain under my left shoulder blade, and this appears to have some sort of connection to overloading the weak left wrist ("radiating pain").
MRI in July 2012 came out normal, as did the bloodworks. A repeat, more thorough EMG was done in August 2012, and both legs, abdomen, neck & tongue came out clean. For the arms, similar outcome to the previous EMG. Distal latencies in hands clearly prolonged (around 5 ms), NCV normal, no conduction blocks found. There are occasional fasciculations in the legs too, but nothing like it has been in the arms for the last year or so, and none were caught during the EMG.
According to the EMG specialist, this is a "motor neurone disorder" which he however thinks "does not quite smell like ALS", mainly since it is still purely limited to the hands more than a year after the onset of obvious clinical symptoms. The chief neurologist, on the other hand, concluded this is "probable onset of ALS". I went through a spinal tap last Tuesday and am still waiting for the results. If nothing comes out, there will probably be nothing else than a follow-up later in the fall to see if the symptoms have started to spread. I'm thinking of suggesting IVIg to rule out MMN, if they don't come up with that by themselves.
I wanted to ask, if somebody else has experience on for how long the EMG can be clean in other regions after clear loss of function in hands (I'm having real hard time typing this), and if the prolonged distal latencies are typical of ALS.
My symptoms started as weakness during long typing sessions in Dec 2010, and until Jun 2011 presented as something you would expect in CTS (wrist drop, cramps when turning the wrist downwards). In June 2011, fasciculations started simultaneously in both hands, arms & shoulders and have continued ever since.
By August 2011 I had trouble using my left hand (loss of finger movement & wrist straightening).
The situation developed quite slowly - thenar atrophy became obvious around March 2012 without much loss of function as compared to the situation in September 2011. By that time the right hand had remained fully operational in spite of continuos fasciculations. Since June 2012, the strength in the right wrist and thumb have clearly started to decrease. Can't hold a power drill with one hand any more etc.
I had my first EMG & NCV in June 2012. Widespread unit loss in both upper extremities, fasciculations, polyphasy. NCV normal, but distal latencies in hand motor nerves prolonged. No conduction blocks found. Diagnosis "root level damage, MND can't be ruled out". In addition to hands, one leg was tested with normal EMG. Clinical tests documented the obvious weakness. Reflexes & Babinski were inconclusive. In addition to the weakness, there's a point of pain under my left shoulder blade, and this appears to have some sort of connection to overloading the weak left wrist ("radiating pain").
MRI in July 2012 came out normal, as did the bloodworks. A repeat, more thorough EMG was done in August 2012, and both legs, abdomen, neck & tongue came out clean. For the arms, similar outcome to the previous EMG. Distal latencies in hands clearly prolonged (around 5 ms), NCV normal, no conduction blocks found. There are occasional fasciculations in the legs too, but nothing like it has been in the arms for the last year or so, and none were caught during the EMG.
According to the EMG specialist, this is a "motor neurone disorder" which he however thinks "does not quite smell like ALS", mainly since it is still purely limited to the hands more than a year after the onset of obvious clinical symptoms. The chief neurologist, on the other hand, concluded this is "probable onset of ALS". I went through a spinal tap last Tuesday and am still waiting for the results. If nothing comes out, there will probably be nothing else than a follow-up later in the fall to see if the symptoms have started to spread. I'm thinking of suggesting IVIg to rule out MMN, if they don't come up with that by themselves.
I wanted to ask, if somebody else has experience on for how long the EMG can be clean in other regions after clear loss of function in hands (I'm having real hard time typing this), and if the prolonged distal latencies are typical of ALS.