ColleenMarie
Member
- Joined
- Jan 5, 2022
- Messages
- 22
- Reason
- PALS
- Diagnosis
- 12/2021
- Country
- US
- State
- NC
- City
- Cary
Hello Everyone and thank you for your kind response, time and energy. I have been coping with some speech issues since May of last year. I have finally completed most tests with Neurology and my MRI, Barium Swallow, ENG, Blood Work, Sleep Study (GP put that in) look normal as of now. My speech is lousy though I have tried exercises and doing what I can. What the neurologist is left with is ALS, Bulbar. I am waiting to get a second diagnosis from an ALS Clinic when they can fit me in but the wait is long to be seen post holiday and with the pandemic burden. I lost a friend to ALS in the past so I know how terrible this is. I think I would appreciate any feedback you have on 2nd opinions, on managing the stress level as this is introduced into your life When I tried to ask about other possibilities or anything else with this neurologist, I am told to watch how things progress and then if I want, get another opinion. The Neurologist said that it doesn't always progress so quickly when it starts with Bulbar. I worry about how quickly things progress while I wait of course in spite of being told this. She would just say she knows it is hard and frightening. Do those with Bulbar have facial any early numbness, bite their tongue, difficulty swallowing? Again, thank you for welcoming me, for the support. I haven't anyone else out there to talk to and the 3 people in my family who depend on me are devastated as there was so much loss in this family already.