t34gib
Distinguished member
- Joined
- Jan 2, 2009
- Messages
- 234
- Diagnosis
- 12/2008
- Country
- US
- State
- FL
- City
- Fort Pierce
Hi everyone. I am back from the Mayo Clinic in Jacksonville with a Dx of Bulbar Palsy and technically or clinically ALS. The Dr. said it seems to be in the Bulbar region only and all other test came out good. I think I am in the gray area. He feels it is slow progression and we will look at the next 6 months to see what happens. He also said that someone who has slow progression does not usually change progression rate. I am going back on Monday to get enrolled in the research trial for the Avanir drug. It is still pretty confusing to me. But I am going to take this one day at a time and do the best I can to just go on living.
I do not have any other symptoms except bulbar and then it is only slurred speech or speech problems with some swallowing issues, very mild. The tongue has changed. I am not sure what to expect in the future or how fast things will change. The Dr. told me some people stay this way for years and some never really get any of the limb involvement. I really don't know how to interpret the info except to accept what he is saying. I saw the speech pathologist and the pulmonologist. I have very good scores in pulmonology. My speech is the biggest problem. I was told not to overdo it as it will cause me to lose the ability quicker. So I am doing a lot of email and instant texting to family and friends.
Any advise is greatly appreciated.
NancyS
I do not have any other symptoms except bulbar and then it is only slurred speech or speech problems with some swallowing issues, very mild. The tongue has changed. I am not sure what to expect in the future or how fast things will change. The Dr. told me some people stay this way for years and some never really get any of the limb involvement. I really don't know how to interpret the info except to accept what he is saying. I saw the speech pathologist and the pulmonologist. I have very good scores in pulmonology. My speech is the biggest problem. I was told not to overdo it as it will cause me to lose the ability quicker. So I am doing a lot of email and instant texting to family and friends.
Any advise is greatly appreciated.
NancyS