A post of charlottecorday must've been deleted, as I don't see it. No matter, though. I am not offended by trfogey's post, though I don't agree with his/her characterization of my state of mind. Pessimistic? Yes, I am somewhat pessimistic about my chances for a non-ALS diagnosis. I'm hoping that I'm wrong. But I am not in denial, either.
I've had two "dirty" EMGs. MRIs show nothing to account for my symptoms. Blood tests are normal. Two compassionate neuros have now told me (and my wife) that they suspect ALS. The second neuro is a specialist in ALS and other neuro-muscular disorders, and saw me at the ALS clinic at the U of MN. He's a former director of the clinic. Both docs have mentioned monomelic amyotrophy and MMN as the only differential diagnoses, but then have stated the reasons why they doubt these in my case. Both say that widespread fascics would not be expected in MA, second neuro noted that I have somewhat brisk reflexes in the ankle of my left foot (any involvement of leg/feet rules out MA if I understand correctly). Both neuros have told me flatly that I do not have conduction block, that the diffuse presentation in my left arm is more indicative of ALS than MMN, and my blood tests don't indicate MMN (ganglioside panel).
The clinic nurse told me that my progression has been slow (doctor indicated this as well), and that this was good news. She said that "it tends to stay slow" and that they are seeing some long-term patients (I think she indicated three with 20+ years since diagnosis). I know she wants to give me some hope, and I appreciate it. I know that she's not lying (about this tendency). But I know what the statistics say, and information I read tells me that I may not be as exceptional as she would have me believe.
As I wrote earlier, I *am aware* that I may not have noticed early fascics in my left arm. But, as I also stated, I do not believe (for a minute) that I could have missed the types of strong fasciculations that I am now experiencing in my right arm, legs, and back. Halfin's information is helpful and somewhat hopeful in this regard. But am I worried about the implications of these fascics? Absolutely, I am.
I know you've all answered questions like mine again and again. I do appreciate your time and concern. I'm in awe of you, in fact. But I know that no two cases of motor neuropathies are the alike, and I really can't expect to learn much more about my possible diagnosis and possible progression from this site. I will be best off waiting to see what develops, and continuing to listen to my doctor. I am luckier than many of you in that I live close to a clinic where I will get support and info, and I'll try to take advantage of that.
In less than a week now, I'll have another EMG. I expect it to be thorough, and telling. I hope it tells me some good things.
Best to you all,
B
