My Journey Posted September 16, 2022 Report Share Posted September 16, 2022 I was recently diagnosed with MSA, I know MSA is a form of Dysautonomia. But it does seem that not so long ago that I was diagnosed with Dysautonomia, and that seemed so complicated to me as I was trying the make sense, and manage all those symptoms. Now I'm dealing with the symptoms of MSA, including oropharyngeal dysphagia. Can anyone relate? I guess I'm hoping to hear how others manage it all. My symptoms are getting worse and I'm hearing different things from different doctors. It's a lot. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 17, 2022 Report Share Posted September 17, 2022 I'm sorry you are dealing with this. We do have some information here that may be helpful. Multiple System Atrophy Links - MSA - Dysautonomia Information Network (DINET) Quote Link to comment Share on other sites More sharing options...
My Journey Posted September 18, 2022 Author Report Share Posted September 18, 2022 Thank you for your help. Quote Link to comment Share on other sites More sharing options...
GasconAlex Posted September 18, 2022 Report Share Posted September 18, 2022 I'm sorry to hear that, MSA is not at all good. Try and see a speech therapist¹ for the dysphagia as they can at least point out good practice even when your muscles don't cooperate with your brain. Dysphagia is insidious starting as inconvenient and can become life threatening so needs to be treated seriously. Hopefully the doctors can agree because in my experience neurologists can be quite contradictory from one to the next. Remember that you are the patient and the important one, do what is best for you not just what the doctors think is easiest. ¹ at least that's who deal with dysphagia around here, which I found was surprising! Quote Link to comment Share on other sites More sharing options...
MikeO Posted September 18, 2022 Report Share Posted September 18, 2022 I have been labeled with dysphagia as well. I do have difficulties with swallowing. Up side we are so far sure it is not MSA related but more issues with my cervical spine. I have been urged to see a speech therapist but so far have declined (I can only handle so many issues at a time). What has helped is to drink fluids with a straw and be sure to cut up your food into more swallowable small pieces (I have choked with not being able to swallow foods) We do still have on the plate doing a re-trial of pyridostigmine to help with the muscle movement. Best Mike Quote Link to comment Share on other sites More sharing options...
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