tawill
Member
- Joined
- Oct 19, 2014
- Messages
- 20
- Reason
- PALS
- Diagnosis
- 10/2014
- Country
- Uni
- State
- IL
- City
- Vienna
Diagnosed with bulbar onset MND this month. Go to first visit in ALS clinic on Tuesday. Have Riluzole but haven't started it yet due to the cautions about driving etc. when first taking it. Still thinking the MRI's after the clinic will say NOT ALS! People are having more and more trouble understanding me at work, and I definitely am having some swallowing issues, possibly even laryngeal spasms with some stridor on occasion. Can't even fathom not being able to work as a nurse. So many of us are 57-58. As you can see, flight of ideas with a million questions, some of those I don't want answered. Crazy, but I have an autoimmune inflamatory myopathy called Dermatomyositis. It is also a rare disease. I have not let it slow me down much, but this MND may be a different story. I don't even know what else to say. The more I read here, the more fearful I become. Oh well, here I am. So sorry for all of you here.