Still searching an accurate diagnosis

[Davoli]

I have had essential tremors for many years, but doctors now suspect Parkinson's or some other neurological disease, maybe PSP. Little information out there. Carpadopa Levadopa seems to be helping.

[Bolt_Upright]

Welcome to the group. You should consider joining us on the Zoom calls MBAnderson is so nice to host. Lots of nice people on the calls with tons of experience. You WILL be welcomed.

us02web.zoom.us/j/833522248...

Thursdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)

Sundays, 11 am – 12 PM-ish, US CDT.

[Gymsack]

I have heard others say that Penn is a leader in PSP care

pennmedicine.org/for-patien...

You are most welcome here, regardless of which disease they think you have or which disease they finally diagnose you . The symptoms may be a bit different but the effect and what can be done to make life better are similar.

[Davoli in reply to Gymsack]

You are absolutely right.

[park_bear]

>" Carpadopa Levadopa seems to be helping."

Evidence for Parkinson's or PSP

movementdisorders.onlinelib...

[Davoli in reply to park_bear]

Just received results from Dat scan and skin biopsies. Negative for Parkinson's, even if many of the symptoms are similar to Parkinson's.

[JohnPepper]

It matters not what is wrong with you, if you are able to consciously walk properly and consciously bring food to your mouth.

Let your doctor worry about what might be wrong with you,

Good luck!

John

[Davoli in reply to JohnPepper]

You are right, since there is no cure either way. Will be managing symptoms.

[asparagu]

Davoli, before starting on serious medication such as Levo-Dopa, Carbi-dopa with serious negative side effects such as Tardive Dyskinesia, it's crucial to rule in the Parkinson's diagnosis by a neurologist & movement disorder specialist since people with PSP do NOT respond to the traditional L-Dopa C-Dopa drug at all! Best of luck

[park_bear in reply to asparagu]

Levodopa/Carbidopa does NOT cause Tardive Dyskinesia.

Levodopa/Carbidopa can cause Dyskinesia, but that is not the same as Tardive Dyskinesia.

[Ctime]

Have you seen the SynOne test.? This is a commercially available biomarker test for PD and some other disorders. cndlifesciences.com/syn-one... I was part of the trial cohort and the results I received were consistent with other diagnostic tests. (DaTScan, UPDRS etc) I have no idea how much it costs and if insurance will pay etc.

[Davoli in reply to Ctime]

I have had the SynOne test and it was negative for Parkinson's, which brings us to the PSP diagnosis based on clinical history. Current diagnosis is PSP-Parkinsonism. Since many of the symptoms are similar to Parkinson's, I intend to continue to follow posts that are relevant. Knowledge is power.