33m; w/ various symptoms

[tedwilli9]

Hi all. For the past 4 months I’ve been struck with insomnia/staying asleep/vivid dreams. But just recently I think I’m beginning to reach out for things in my sleep and talk. I don’t recall thrashing about. I have no gait issues, rigidity, nor slow movements. Arms still swing. Good sense of smell (my gas alerts me to that!) However, I’ve been twitching recently in my left fingers, have slowed digestion with horrible gas, and my hands are very shaky and tremory post-workout.

I know young onset PD is rare. But a lot of my other labs (EMG; MRIs) and bloodwork are normal. They originally thought I had autonomic dysfunction but took that dx back. Saw rheumatologist and said no to autoimmune. Saw infectious disease doctor — also no.

I have an appointment with a neurologist soon but is not a movement specialist. I think with absence of some classical motor symptoms and more non motor symptoms they’ll just laugh me out of the room. 😞

Any advice or info is welcomed. Hope you’re all doing well

[park_bear]

You can try seeing if levadopa helps, either via prescription or mucuna powder.

[tedwilli9 in reply to park_bear]

Will they just prescribe that to me without other symptoms? And thanks for replying.

[park_bear in reply to tedwilli9]

They are allowed to do so as a test - so do request it. Whether they will or not is up to the MD. Controlled release versions are better for most people.

[tedwilli9 in reply to park_bear]

Thanks. I’ll ask my PCP. If it is something like PD, frankly, I’ll manage. It’ll take some time to get a correct diagnosis but something is super off. I’m also hopeful in the new therapy on the horizon. It may not be a cure but it looks like it’s personalizing health on an individual/cellular level. I hope it for myself and everyone here.

[dreem]

just a thought, have you had a sleep study. Sleep apena cn cause a lot of problems

[tedwilli9 in reply to dreem]

I did. No apnea. Said sleep structure itself was fine but had elevated eye movement. I just woke up now. Maybe slept 4 hours. Probably less. That’s been my usual for 5 months now. Thanks for your input.

[Cbgs]

I suggest seeing a movement disorder specialist

And perhaps ask for a DatScan

Best of luck to U

C!

[tedwilli9 in reply to Cbgs]

Do you think they’ll actually give me a DatScan that quickly?

[Cbgs in reply to tedwilli9]

One nvr knows!

[tedwilli9 in reply to Cbgs]

Well. Only one way to find out. I have a neuro appointment in 2 weeks. I’ll ask for a movement specialist. Sadly the best one is at a different hospital in Boston. Thx. Hope you’re well.

-T

[2bats]

As a first step, I’d recommend going on a Keto diet. It may be that if you’re on a typical sugar/carb diet that your body is starting to protest! I recommend Dom d’Agostino - ketonutrition.org. It’s my belief that my previous high sugar high carb diet caused my Parkinson’s Disease.