Symptoms of PD, seeking answers. Anyone experiencing the same?

@kimmarla I saw an article a while back that talked about a w oman could smell PD. They gave her a piece of a T-shirt the patient had worn and she got all of them correct, except for one ....and a year or so later THAT test subject also was diagnosed with PD. It shuldnl't be surprising that things can be detected by smell Who knows what your dog is looking for when he reads his pee-mail. and baabies can ewcognizze their mother's scent. Who knows what information all the substances we wash away might have been able o tell us.

@kimmarla The "Smelling Parkinson's" Skin Test

A google sarch from AI came back with this.
Discovery:
Researchers at the University of Manchester, working with Joy Milne, developed a test after discovering that people with Parkinson's have a distinct odor on their skin.
How it Works:
The test uses a cotton swab to collect sebum from the back of the neck. Mass spectrometry then analyzes the unique compounds in the sebum to identify a signature specific to Parkinson's disease.
Current Status:
This skin-based test is still in the research phase and is not yet available for clinical use. Scientists hope it will lead to a quicker and easier way to diagnose Parkinson's in the future.

I saw a general neurologist three times over a year but did not get a PD diagnosis. When I asked about PD he said it was unlikely since I did not do a pill rolling motion with my thumbs and index fingers when my hands were at rest. Then I saw an MDS who diagnosed me with PD after a 20 minute examination. He said not everyone with PD does the pill rolling thing. He wants me to get a skin biopsy to confirm, but traveling to the main campus is challenging so I haven't scheduled it yet.

@jatonlouise I heard a story about this on NPR. I don't remember which show.

We are all different. My symptoms were leg tremors upon standing, memory and decision issues, coordination issues, sight issues in only 1 eye, lack of sense of smell, bouts of weird exhaustion, lack of hunger, rapid weight loss, and a few other weird things. So of course it must be depression here’s the drugs for that. BUT at least it was my new PCP so I was also set up with a neuro consult and eventually diagnosed with Parkinson’s (because the levodopa trial worked). I believe we are still in the infancy of figuring out how the brain works. Hopefully the next generation gets some better diagnosis, and treatment options.

I agree it's very frustrating..so many test to rule out what it's not..I've had so many blood test they might a leave an access port..I guess I've got to be patient..my neurologist is confident it PD 1 more test a DATSCAN ..

@bobconfused
You might try getting in touch with the Parkinsons Association. They will send you reading material. They also have chapters usually in all states. Just a thought. I hope you find out what is going on. 🫂

@lisalucier well my datscan came back normal..no major problem with dopamine..so after all these test and still have tremors, right arm dont move when walk..rigidity..memory loss..problems walking..still no answers ..Just about ready to give up and let it run it's course ...

@bobconfused - how hard to have all these tests and still no answers. I'm sorry.

I'd like to be sure you've met a few Mayo Clinic Connect Parkinson's Disease members who can empathize with the difficulty of trying to define exactly what is wrong and how to account for your symptoms @davemc @kayak461 @bruizersmom and @hopeful33250.

@bobconfused
It is no doubt frustrating! If it isn’t Parkinson’s, what is it? Could there be other health issues that is causing these symptoms? There’s something not right, your doctors need to figure it out. How about a second opinion from a different Neurologist? Have you been to see a Movement Disorder Specialist? Don’t give up friend, keep seeking an answer…..something is causing your troubles!