My husband has this disease. He was diagnosed with MSA-C in Sept 2018. He showed signs of something being wrong about 21/2 to 3 years before the diagnose.
He started having a problem with his speech. Was having a hard time forming words. We 1st went to his GP who sent us to a nuero dr.. He was no help at all. We went back to the GP and was then sent to neurologist in Rochester NY who specializes in movement disorders. After seeing Dr. Barbanno for 1 1/2 years and another MRI it was conclude that my Husband has MSA-C. The "hot cross buns" showed on the MRI. Lou, my husband, did not respond well to PD meds and was getting worse FAST.
He does not have any tremors. His symptoms are problems walking, gait, swallowing, eyesight, muscle coordination, urinary mishaps, REM sleep disorder. The latest to add to this list is acid reflux in the middle of the night. He sleeps with the head of the bed up but there are time when I have to change the bedding the next morning.
Things that help are physical therapy and speech therapy. In short EXCERSICE. We have made changes to somethings like drinking from water bottles so if he drops it or it gets knocked over spills are small. Hard chairs in the dinning room and by the bedside, shower stall put in the 1/2 bath, chair lifts, railing for stairs, etc. Yes this list will get longer as the disease progresses.
I would like to extend my sincere sympathy to anyone who has this disease. There is no cure yet.
If anyone would like anymore information on my experience with Lou please let me know. So little is known about MSA and it is so hard to find any support groups because of its rarity.