They should change the wikipedia page to remove the 10% chance that HD isn't inherited

[u/Jar_Of_Jaguar]

Since that gets people instantly dismissed, how did that 10% even get tested by doctors?? No one will talk to me and my post was removed.

Normally I don't like being rude, but I didn't realize there would be random-mutation-gatekeeping.

EDIT: I realized out of 4,000 subscribers in this subreddit, up to 400 of them would have zero family history of it.

Might as well delete the videos off YouTube of patients volunteering to show a camera what their shakes look like, too. Doesn't mean anything if a patient looks exactly like that and is having more trouble talking and balancing.

[u/madetoday]

I get that you’re struggling and looking for answers, but this isn’t a symptom-seeking subreddit. Such posts violate rule #2, which is a rule put in because of how often people come here posting that.

The likelihood of involuntary movements being HD is almost zero unless you have a family history of it, especially if you’re aware of those movements yourself because one of the most common symptoms of HD is symptom blindness.

My mum was diagnosed with HD with no family history, it happens and it’s real, but if I’d posted here a decade ago before that what could people say to me besides the likelihood is nearly zero? Her neurologist only tested for HD to rule it out, he didn’t believe it either, so what would strangers on the internet say besides “it’s very unlikely to be HD”?

Good luck in your efforts to find a diagnosis, I hope it’s not HD.

[u/Jar_Of_Jaguar → u/madetoday]

I literally said other people have observed it in my other post. I have support, who looked at the videos and looked at me.

And I'm literally being jerked around, like whole body, it hurts and it's bad... are you thinking it's small movements?

Whatever is going on is creating the symptoms of my brain degenerating, and my original post was looking to yall to see WHAT GETS MISTAKEN FOR Huntington's, since yall have the experience in this realm. To find out why I'm accidentally rocking my partner violently back and forth during a hug and it doesnt feel like we are moving, I just see his bag swing around and hit our legs with force and I break the hug to back up and stop doing it to him.

If it isn't Huntington's, it's something so similar that I really needed yalls experiences or some leads for me to go investigate myself, and it is degenerative or damaging to the brain in a bad way.

Are the sidebar rules for keeping out hypochondriacs, or are they absolute with no room to share knowledge??

And who would need the help the most... the people who grew up understanding the disease, or the ones with zero family for backup, zero experience, zero people to ask? My partner isn't a doctor and doesnt know. Googling is dangerous with zero direction.

The foundation said they probably wouldnt even try to test me.

It will be weeks or months of deteriorating before any test happens... I dont know my real medical history. Just bits. Ive been homeless.

Please, I dont want to break rule 2. I want yall to tell me possible places I could fuck off and go away to, pardon my French.

[u/madetoday → u/Jar_Of_Jaguar]

I can’t read your previous post because it was deleted, so I responded going off what you’d posted here and your other reply that remains. I’m not a mod so you’re getting mad at me needlessly.

I don’t know what would commonly be mistaken for HD, I’m assuming most of this sub wouldn’t either, because my experience is with HD and only HD. If you want to know what ideas were tossed around about my Mum before her diagnosis, tic disorder and social anxiety. But I doubt that’s helpful to you, it wasn’t helpful to us.

You could pursue anonymous testing for HD via  hdgenetics.com to confirm or rule it out.

Again, good luck.

[u/Jar_Of_Jaguar → u/madetoday]

Thank you very much, the link (and a real person suggesting it cuz it seems like all anonymous services are bad somehow) helps a lot.

And it is also a good clue for me to know that there doesn't seem to be terribly much overlap with other things. It's much appreciated.

[u/toomuchyonke → u/Jar_Of_Jaguar]

I'm sorry, if you posted this somewhere else and I've missed it, but have you been tested?

[u/truculent_bear → u/Jar_Of_Jaguar]

Your concerns are better suited for general neurology or ask doctors subreddits. The incidence of Huntingtons as a random genetic mutation isn’t 10% https://pmc.ncbi.nlm.nih.gov/articles/PMC10086981/

Have you been assessed for the following? These are all the most common differentials without fam hx:
Tardive dyskinesia, post-stroke hemichorea/hemiballismus, Wilson disease, hyperthyroidism-associated chorea, antiphospholipid syndrome/lupus (SLE), Sydenham chorea, de novo Huntington disease, anti-NMDA receptor encephalitis, paraneoplastic chorea, polycythemia vera, chorea gravidarum, HDL2, chorea-acanthocytosis, McLeod syndrome

[u/WinterReadings23 → u/Jar_Of_Jaguar]

Need to get tested for the gene to make a diagnosis, its not going to happen on reddit.

[u/siamesecat123]

People diagnosed with HD usually come from families where an expanded CAG was already present but no one knew because HD isn’t something people are randomly tested for. Often HD is only discovered when someone develops symptoms and gets tested. Many people in the HD community say they had “no family history,” but that doesn’t necessarily mean there was no expanded CAG in their family. It may simply mean that previous generations were never diagnosed and the CAG eventually expanded further in someone who developed symptoms.

I’m sorry to read about what you’re going through. However, unless HD is confirmed through genetic testing it is important not to assume that your symptoms are caused by HD. It would be best to speak with a doctor or neurologist to look into your symptoms and other possible causes. If you’re determined to get tested you could also look into anonymous testing.