Diagnosed Jan 22nd...

[kevbear1957]

My neurologist diagnosed me with"possible als" about a week & 1/2 ago. Here's my question: is "possible" more likely than not to progress on to "probable", then, ultimately, "definite"? I realize, of course, that there is no one way this disease progresses, but I'm just talking about the law of averages here...

My impresssion is that the neurologist is sure it's als, but can't find the evidence to confirm it. I'm pretty much suspecting the same. Have another battery of tests coming up - a 4th MRI, a breathing test, even more blood draws and a spinal Tap (lumbar puncture) this Thursday. Anyone out there have any thoughts?

kevbear1957

 

[kevbear1957]

well, I've had the EMG AND the chest x-ray AND multiple MRIs (with & without contrast) AND innumerable blood tests before the diagnosis, so, it seems to me she's got a pretty good idea what she's talking about at this point

*sigh*

 

[kevbear1957]

Well, I might think that she's on a fishing expedition, except my previous neurologist suspected it too, and handed me over to her because she's the best one they've got for this at Johns Hopkins. This was our first real session & it seems to me that she wouldn't be bringing up a fatal illness on our first meeting if she wasn't already pretty sure of her diagnosis. She says she's got about 90% of the tests done at this point and is just eliminating all other possibles.

My hands are fading fast - I can barely pick up a pen - most of the meat on them has wasted away, my reflexes are very brisk, I tire easily and the EMG wasn't very promising at all. Now my shoulders are starting to waste away as well. If you have any other suggestions as to what this might be, I'd be happy to hear them. We've ruled out autoimmune neuropathy, Lyme disease and Kennedy's syndrome, as well as any virus, infection, injury or environmental cause.