bala80
10-12-2007, 10:08 AM
Hello all,
I'm a first time poster (27y, m) from Melbourne, Aus, and would appreciate any feedback. I am pretty sure I have ALS, but haven't been officially dxd yet. My symptoms started mid July, when I noticed a burning feeling in my toes. Over the next month this had spread all over, and I also noticed I had stopped sweating. In mid August I had an NCV, which showed "a mild demyelinating neuropathy", no EMG was done because I had no motor symptoms.
That night laying in bed, my whole body started to twitch, and the twitching has not stopped since. Since then, I haven't had a good night's sleep, I rise every hour or two or can't sleep at all. A month later (mid Sept), I had repeat NCV with EMG, the nerve conductions had returned to normal, and EMG was done on my right quad and ant. tibialis which showed "mild fasciculations with no other abnormalities". My neuro noted that due to the recovery of my NCV, I should start to recover and that the twitching was not dangerous. "It doesn't look like anything sinister" he keeps on saying. He prescibed me 0.5mg clonazepam nightly prior to this for anxiety as he saw it, and said that this would in no way interfere with the EMG. (I've been taking this on and off since to help with insomnia). It's now one month later, and the twitching is unrelenting along with muscle pain, mostly in my legs (calves, thighs, feet), and I am noticing progressive atrophy of my leg muscles (esp calves). I am convinced I have ALS, and an aggressive form of it too.
Yesterday I had an hour&half-long consult with the chief NM specialist at the hospital who performed NCV/EMG on me again. The NCVs improved further, and EMG of several muscles were normal (no fibs or PSWs), normal motor-unit potentials. Needless to say, I was totally surprised with this, and he said "we can rule out MND from this EMG", and diagnosed me with small fiber and autonomic neuropathy due to my sensory symptoms. I asked about a muscle biopsy and he said its not required. Every blood test I've had is normal, no inflammatory markers, normal CK (he has ordered others now, anti-gliadin - he thinks there is a possibility of celiac - I'm clinging onto this as there has been a reported case of celiac resembling ALS) They do not think I have ALS because of the peculiar onset and sensory involvement, and they think I am recovering from a demyelinating episode. Unfortunately I'm going the other way, each week my muscles seem to be losing more bulk, and the twitching never stops. Mind you, the twitching is less in mornings and gets more frequent throughout the day, I had the EMGs done in the morning and the neuros were aware of this and said that if I had ALS then they would see signs of denervation regardless. I mentioned a biopsy and he said it was not necessary, that I do not have ALS.
I walked out confused, not knowing what to make of it. My parents have all their trust in the docs and I can't bear to look at them when they have so much hope and say that everythings gonna be ok. Mentally, I know I'm in massive trouble, and am trying to ride it out. I see my neuro in 2 weeks again. How can I have quickly advancing symptoms like this and a clean EMG? I can't make sense of it all, and I'm guessing most of you nice folk can't either. I'm also guessing you haven't heard of a case like mine either! I have all the hallmarks of ALS clinically but no dx, and I feel I should be being proactive to try to possibly heal this, but then am discouraged because this is going too fast to be stopped. Any advice would be greatly appreciated, thanks for making it through this mammoth posting.
Demis
I'm a first time poster (27y, m) from Melbourne, Aus, and would appreciate any feedback. I am pretty sure I have ALS, but haven't been officially dxd yet. My symptoms started mid July, when I noticed a burning feeling in my toes. Over the next month this had spread all over, and I also noticed I had stopped sweating. In mid August I had an NCV, which showed "a mild demyelinating neuropathy", no EMG was done because I had no motor symptoms.
That night laying in bed, my whole body started to twitch, and the twitching has not stopped since. Since then, I haven't had a good night's sleep, I rise every hour or two or can't sleep at all. A month later (mid Sept), I had repeat NCV with EMG, the nerve conductions had returned to normal, and EMG was done on my right quad and ant. tibialis which showed "mild fasciculations with no other abnormalities". My neuro noted that due to the recovery of my NCV, I should start to recover and that the twitching was not dangerous. "It doesn't look like anything sinister" he keeps on saying. He prescibed me 0.5mg clonazepam nightly prior to this for anxiety as he saw it, and said that this would in no way interfere with the EMG. (I've been taking this on and off since to help with insomnia). It's now one month later, and the twitching is unrelenting along with muscle pain, mostly in my legs (calves, thighs, feet), and I am noticing progressive atrophy of my leg muscles (esp calves). I am convinced I have ALS, and an aggressive form of it too.
Yesterday I had an hour&half-long consult with the chief NM specialist at the hospital who performed NCV/EMG on me again. The NCVs improved further, and EMG of several muscles were normal (no fibs or PSWs), normal motor-unit potentials. Needless to say, I was totally surprised with this, and he said "we can rule out MND from this EMG", and diagnosed me with small fiber and autonomic neuropathy due to my sensory symptoms. I asked about a muscle biopsy and he said its not required. Every blood test I've had is normal, no inflammatory markers, normal CK (he has ordered others now, anti-gliadin - he thinks there is a possibility of celiac - I'm clinging onto this as there has been a reported case of celiac resembling ALS) They do not think I have ALS because of the peculiar onset and sensory involvement, and they think I am recovering from a demyelinating episode. Unfortunately I'm going the other way, each week my muscles seem to be losing more bulk, and the twitching never stops. Mind you, the twitching is less in mornings and gets more frequent throughout the day, I had the EMGs done in the morning and the neuros were aware of this and said that if I had ALS then they would see signs of denervation regardless. I mentioned a biopsy and he said it was not necessary, that I do not have ALS.
I walked out confused, not knowing what to make of it. My parents have all their trust in the docs and I can't bear to look at them when they have so much hope and say that everythings gonna be ok. Mentally, I know I'm in massive trouble, and am trying to ride it out. I see my neuro in 2 weeks again. How can I have quickly advancing symptoms like this and a clean EMG? I can't make sense of it all, and I'm guessing most of you nice folk can't either. I'm also guessing you haven't heard of a case like mine either! I have all the hallmarks of ALS clinically but no dx, and I feel I should be being proactive to try to possibly heal this, but then am discouraged because this is going too fast to be stopped. Any advice would be greatly appreciated, thanks for making it through this mammoth posting.
Demis
