dx then un-dx

[Bhaktitoo]

my grandfather had Parkinson's. My mother had essential tremor, which I developed in my late 30s. In my late 50s, the nature of the tremor changed and I began having occasional trouble walking, muscle weakness, mild cognitive issues, among other sx. My doctor wanted me to be evaluated for PD but then I moved across the country and they would not accept her referral here. after years of effort, I was referred to rheumatology. The referral said I had joint pain. Because at that time I did not have an elevated ANA, they said no need to come back. Because I have POTS and get migraines, I got a referral to neurology who said they would monitor me but since I had essential tremor and am aging, it was all to be expected. They have now been monitoring for 8 years. because I have MCAS, I worked long and expensively with a functional medicine doctor and healed my gut. Following Covid, that has come undone, that doctor quit, as have five of my other providers. I've learned reading here that the constipation which I now have had for months for the first time in my life as well as intractable insomnia which I've had for 10 years and now means 0-3 hrs shallow broken sleep, might fit the Parkinson's picture. I know what my grandfather's tremor and movement looked like and mine look like that. i'm now in my late 60s, the age at which he was diagnosed. I know it is not only essential tremor--it's no matter what I do and at rest. I'm going to have to move to get care. My medical chart here leads with this dx: anxiety about health. how and where to begin again? how to get around Google search garbage about where the best Parkinson's care is? In the US, alas. I appreciate deeply the level of scholarship and sharing here and expect to continue that sort of thing. I knew I had pots in 2008 but could not get anyone to pay attention or test me until I went to the Cleveland clinic in 2014 so I don't expect to be able to surrender my care to anyone else but unfortunately I cannot order my own testing or imaging. I am more angry than anxious.

[park_bear]

Remedies for Parkinson's constipation: healthunlocked.com/cure-par...

I take it you are in the US as I am. When I started having significant neurological symptoms, I called the local neurologist, made an appointment, and got a diagnosis. I suppose everywhere is different, and maybe I was just lucky.

[Bhaktitoo in reply to park_bear]

Thanks. Definitely different here from anywhere else I've lived. It's like a cabal--you aren't allowed second opinions and once one has spoken, no one else will pursue.

[Esperanto]

Rest tremor can occur alongside essential tremor in PD leading to missed diagnoses. Studies show that essential tremor and PD can coexist, despite the misconception that they cannot. Both conditions can have various types of tremors. Rest tremor can be seen in 20-30% of patients with essential tremor, especially in severe cases. Action tremor can occur in both conditions, with kinetic tremor being more pronounced in essential tremor. Head and jaw tremors can occur in both, but with different characteristics. Bradykinesia and freezing are specific to PD. The diagnosis may need to be adjusted as the clinical features evolve. Objective measures and imaging can help differentiate between PD and essential tremor, though imaging has limitations.

ncbi.nlm.nih.gov/pmc/articl...

[Bhaktitoo in reply to Esperanto]

Thank you so much. I'm going to copy this and try again to get another crack at the movement disorders clinic or different neurologist.