my husband

Hi Dr. Sanchez……I have submitted several questions regarding my husband’s diagnosis of Parkinson’s Disease and you have answered all of them. My husband was never convinced that he had PD because after 2 1/2 years the Sinemet was still not working for him, and his neurologist could not understand why. A year ago, I took him to the Movement Disorder Clinic at MUSC for a 2nd opinion and they also said he had Parkinson’s Disease. He has constant tremors on his right side so bad and also stiffness in his right arm, that he can no longer use his right hand/arm, but has never had “at rest” tremors. The tremors and stiffness hasve now moved to his left side. In March of this year, he asked me to take him to the Movement Disorder Clinic in Durham for another opinion, so I got him an appt. for July. After 2 hours with him two neurologists said he did not have PD. They have now diagnosed him with Corticobasal Degeneration. My husband and I were devastated with this news, and he wanted to know if they were sure. They said that the fact the Sinemet had done nothing after 2 1/2 years was their first clue. If it had been PD, the Sinemet would have done something for him. The testing they did at Durham was just for the CBD and everything was positive. Why wouldn’t his neurologist here have him tested for something other than PD if the Sinemet wasn’t working? Would this have made any difference if we had known his real problem 2 1/2 years ago? Where do we go from here?

Dr. Sanchez-Ramos said...

I can’t second guess other neurologists, but clearly lack of response to adequate doses of levodopa/carbidopa should have raised suspicions that he suffered from an atypical parkinsonism. If your neurologists did not pick up on the serious cognitive changes associated with Cortico-basal-ganglionic degeneration, as well as the difficulty in voluntary eye movements, then they would have missed that diagnosis. The prognosis is poor, primarily because of the progressive dementia that is part of this disorder.