notBrad
Senior member
- Joined
- Feb 26, 2015
- Messages
- 632
- Reason
- PALS
- Diagnosis
- 04/2015
- Country
- US
- State
- OR
- City
- The coast of
Well, went to see Dr. Goslin at the Providence ALS clinic in Portland and she confirmed ALS. They're running about a dozen "hail mary" blood tests for things like Lupus, heavy metal poisoning, auto-immune issues and so on but at this point it seems to be pretty well confirmed. Unless one of them shows something they want to start me on riluzole ASAP.
Good news is I got a diagnosis early (~6 months into symptoms) and as of now still fully functional just the hand weakness, fasciculations and no speech issues other than occasional disarthria (almost exclusively velopharyngeal dysfunction) when I'm tired or stressed.
Took a barium swallow test and all was well, no aspiration just a very very small amount of weakness at the bottom of my tongue. I'll be seeing a speech therapist for exercises to aid with improving that next week.
Breathing capacity is excellent (near 100%) and they already wrote me a letter to allow me to claim disability immediately.
They're going to put me into a multi discipline clinic where every 90 days I spend 4 hours with 10 different specialists addressing a variety of things. This supposedly can add about a year to the survival time and also help delay onset of ventilation dependence and other issues. And of course they'll let me know about any trials coming up I may be a fit for.
All things considered I think that going for a second opinion would be a waste of time given the expertise I've had access to, the two dirty EMGs and the myriad other tests that have all come back negative. I could but not sure the delay versus potential for a different diagnosis is worth it.
Good news is I got a diagnosis early (~6 months into symptoms) and as of now still fully functional just the hand weakness, fasciculations and no speech issues other than occasional disarthria (almost exclusively velopharyngeal dysfunction) when I'm tired or stressed.
Took a barium swallow test and all was well, no aspiration just a very very small amount of weakness at the bottom of my tongue. I'll be seeing a speech therapist for exercises to aid with improving that next week.
Breathing capacity is excellent (near 100%) and they already wrote me a letter to allow me to claim disability immediately.
They're going to put me into a multi discipline clinic where every 90 days I spend 4 hours with 10 different specialists addressing a variety of things. This supposedly can add about a year to the survival time and also help delay onset of ventilation dependence and other issues. And of course they'll let me know about any trials coming up I may be a fit for.
All things considered I think that going for a second opinion would be a waste of time given the expertise I've had access to, the two dirty EMGs and the myriad other tests that have all come back negative. I could but not sure the delay versus potential for a different diagnosis is worth it.