BrianD
Distinguished member
- Joined
- Sep 15, 2009
- Messages
- 415
- Reason
- PALS
- Diagnosis
- 08/2009
- Country
- US
- State
- Colorado
- City
- Colorado Springs
Hi all...
So here is my intro for myself...
I was diagnosed with MND/ALS on 8/28 by my in-town neurologist, based on the evidence of both upper and lower motor neuron disease (including EMG). I have many of the typical symptoms... with one key exception... I do not show signs of significant weakness.
(Yes, I know this a major point... but bear with me a moment)
Was told in the office his diagnosis was ALS, and given perscription for Rilutek (which I am not taking yet based on my side effect research and current symptoms)
This led to second opinion about a week later with a more specialized neuro at the Univ of Colo. This confirmed all of my above symptoms of course. However, this neuro is hesitant to give a "definitive" diagnosed of ALS without seeing clinical signs of weakness... which is probably the right course of action. Next follow-up with another EMG is there in Nov. But this neuro does indicates this is a likely diagnosis.
In addition to clinical symptoms, I do have some observed coordination changes, such as missing a step in the stairs periodically, or grazing my shoulder on the door frame as if I "miscalculated" where I needed to step or lost my balance a little.
I do have what I would say is slight weakness in my hands, based on noticable (again slight) changes on my typical activities (such as using pliers, dropping heavy objects)... but not a "clinical weakness".
So... do I really have ALS? Yes, Maybe, I don't know. Of course the answer is we'll wait and see how things progress from here. But reading your own medical records that contain "It is certainly difficult to make this grave diagnosis..." sure hits you pretty hard.
With a wife, and boys ages 9 and 12... my mind just can't help but get constantly distracted with lots of "what ifs". This is not worrisome/anxious type of thinking, but just lots of stuff.
I'm thankful that whatever it is, it does not appear today to be a quickly progressing form. And I'm already thankful for this forum that has a ton of great info... and more importantly a ton of great folks (which you now have another guy praying specifically for you). Actually... I'm thankful for lots of stuff, but that can be a topic in itself. :razz:
So... long intro to say "Hi", but now you know more about me.
Brian
So here is my intro for myself...
I was diagnosed with MND/ALS on 8/28 by my in-town neurologist, based on the evidence of both upper and lower motor neuron disease (including EMG). I have many of the typical symptoms... with one key exception... I do not show signs of significant weakness.
(Yes, I know this a major point... but bear with me a moment)
Was told in the office his diagnosis was ALS, and given perscription for Rilutek (which I am not taking yet based on my side effect research and current symptoms)
This led to second opinion about a week later with a more specialized neuro at the Univ of Colo. This confirmed all of my above symptoms of course. However, this neuro is hesitant to give a "definitive" diagnosed of ALS without seeing clinical signs of weakness... which is probably the right course of action. Next follow-up with another EMG is there in Nov. But this neuro does indicates this is a likely diagnosis.
In addition to clinical symptoms, I do have some observed coordination changes, such as missing a step in the stairs periodically, or grazing my shoulder on the door frame as if I "miscalculated" where I needed to step or lost my balance a little.
I do have what I would say is slight weakness in my hands, based on noticable (again slight) changes on my typical activities (such as using pliers, dropping heavy objects)... but not a "clinical weakness".
So... do I really have ALS? Yes, Maybe, I don't know. Of course the answer is we'll wait and see how things progress from here. But reading your own medical records that contain "It is certainly difficult to make this grave diagnosis..." sure hits you pretty hard.
With a wife, and boys ages 9 and 12... my mind just can't help but get constantly distracted with lots of "what ifs". This is not worrisome/anxious type of thinking, but just lots of stuff.
I'm thankful that whatever it is, it does not appear today to be a quickly progressing form. And I'm already thankful for this forum that has a ton of great info... and more importantly a ton of great folks (which you now have another guy praying specifically for you). Actually... I'm thankful for lots of stuff, but that can be a topic in itself. :razz:
So... long intro to say "Hi", but now you know more about me.
Brian