- Mar 8, 2013
- Learn about ALS
There are good doctors in Philly which is where it says you are located..If they think you something more rare than ALS I would think they would refer you on to Mayo clinic or the like. Keep pushing, not everyone fits into a neat mold of neuro conditions. Certainly there are cases that are more complex and syndromes still to be defined etc. That is rare though. Good luck, if you are progressing at that speed you need to keep raising the flags with your doctors and push to be referred on if they have hit the wall.