symptoms are hard to describe i feel rigid and stiff and my balance feels off. i dont fall or anything. legs feel wobbly and heavy. when i extend my arms my forearms and biceps shake and feels like there is some resistance. when i bend my neck down and chin touches my chest and then i move my head back up straight feels like an invisible hand is pushing my neck down as i move my head back straight.
just a general feeling of shakiness esp in shoulders even at rest (cant see). internal tremors and when i get nervous feels like my whole insides are shaking too.
clean mri, clean gastric emptying study, clean basic blood tests, normal stool tests, normal endoscopy no ulcer celiac h pylori. normal basic neuro clinical several months ago. no emg or nerve study yet. normal heart tests ecg etc
basically i am asking could this be yopd? any ideas? family is also at wits end and think its all in my head. can a DATSCAN confirm yopd once and for all?
grandpa had essential tremor or pd or both not sure.
several times domperidone and zofran in the summer
amitriptyline 20 mg for several months
colchicine 20 mg for several months
currently no meds
A warm welcome to the community.
I can understand why you’d suspect that you have young onset Parkinson’s, especially when you mention your internal tremors. I would advise that you speak to your GP about this so that they can take the necessary steps to investigate your symptoms. In the meantime, we have a lot of helpful information on website about YOP which you may find useful, you can find this information here: https://www.parkinsons.org.uk/information-and-support/young-onset-parkinsons
Our helpline and Parkinson’s local advisers are here to answer any questions you have about being younger with Parkinson’s. Call us on 0808 800 0303 or email us on [email protected].
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I had a DaTSCAN at age 47 which confirmed my YOPD, having had various other symptoms. My understanding is the test is about 90% accurate. I had my test privately on health insurance, not sure how easy it is to get on the NHS, though for obvious reasons I doubt you will be able to get tested for several months in any case.
I agree JF. GP’s are probably not /have the time in the present situation. I am waiting on numerous specialist appointments and see no hope of them happening until early next year as there will be a huge backlog.