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I am so sorry you are going through this. I know you are suffering and wish there were better answers. I was diagnosed with "SFN likely underpinning autonomic dysfunction, and diffuse muscle twitching and weakness" at Temple BSW. I have no more answers than that. I experienced the same response from UT Southwestern when I was referred to their neuromuscular clinic. I started to have difficulty swallowing in September and had a swallow study on the 30th. It sounds like your PCM is very helpful. Do you mind sharing? I just fired my 3rd one for the year when she said all my symptoms were "somatic, BH health in nature, with strong psychological overlay" despite the results from my neurologist. I am looking at trying to go to Stanford or Mayo, but I need a referral and a new PCM.
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Hello @gpo and welcome to the Parkinson's (PD) support group on Mayo Connect. I'm sure you must be frustrated at the inability of your medical team to come up with some answers to help with the symptoms you are experiencing.
You mention, difficulty swallowing." What type of difficulty are you experiencing? Do you choke when you swallow or does food get stuck? Often, speech therapists can offer suggestions and exercises to help with swallowing problems. Speech therapists are really unsung heroes for individuals with neurological issues. Have you been referred for speech therapy?
Have any meds or physical therapy been offered to you for the other movement disorder symptoms?