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Thank you so much for the invitation to other groups. I am just amazed at this forum and all that is done throughout people's communications. MY biggest complaint in life right now is that out of all of the Dr.'s I see, no one is at the "helm" of it all so to speak. I have my Ph.D., which is a research degree, so I can get to a lot of information that most of my physicians do not have. So much is inter-related . I am losing energy whe it comes to informing my physicians what is going on and all of the related tangents which are involved in this mess of a body!

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Replies to "Thank you so much for the invitation to other groups. I am just amazed at this..."

Susan! Your last sentence is very frightening to me. My husband died in 2018 from Multiple Symptom Atrophy. He went to doctor after doctor for issues. I feared he had Parkinson's Disease which my mother lived with for many years. A well-respected neurologist (hahaha) said no. He was told he had COPD and put on inhalers. After consulting a pulmonary doctor and passing the tests with flying colors, he was asked "WHO TOLD YOU THAT YOU HAVE COPD?" His blood pressure would drop leaving him unable to stand. I would rush him to the ER and they would give him IV's and he would perk right up. We would come home and then again, another spell would occur. Long story short, a hospitalist called me at home and we went over all my husband had been experiencing and his words were "We are going to get to the bottom of this!" He called in a hospitalist neurologist and he knew which test to perform and his diagnosis was terminal. And looking up the symptoms of MSA, my husband had them all. He was going to a multitude of physicians and yet they did not contact one another to compare notes. I feel bitterness and confusion and why they did not do so. Though there is no known cure, his decline and death has left me with bewilderment of the medical community!