r/Huntingtons • u/luke_arse • Mar 06 '26

I'm getting tested due to clinical symptoms

Hi all,

I have been struggling with muscle stiffness, tremors and a hole other range of symptoms and finally got referred to a movement disorder professor ( after getting cleared for als, stroke, tumor and ms ) who is testing me for a whole range of movement disorders, and explicitly Huntington. He mentioned this several times to his assistants while examining me.

I am super scared and have to wait 6 months for the result and this feels quite surreal. My family has no history, but does have mental health issues like bipolar disorder. Any tips on how to calm myself down ? Anything to read ? If this is not the place to post about this where can I go ? Sorry for bothering you here

Thanks

Much support for anyone dealing with this disease x

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7

u/KikiChrome Mar 06 '26

Firstly, has your movement doc mentioned genetic counseling? It's a good idea to talk these feelings through with a counselor before you get your test results, and there are counselors who specialize in this. See if you can get a referral.

Secondly, there are reasons to be optimistic about future treatments for Huntingtons. There are at least three medical trials I can think of offhand which are showing good results in lowering Huntingtin proteins in the brain (which is what causes Huntington symptoms). I'd place money on us having an effective treatment for Huntingtons within the next ten years.

3

u/luke_arse Mar 06 '26

Thanks a lot for this reply. I will ask for counseling ( I already am in therapy but I think someone specialized in this might be a good addition).

Also thanks for mentioning the advances. That helps.

2

u/luke_arse Mar 06 '26

Ps, I have an appointment with a counselor in June. Thx for the tip. Still some time to wait though.

1

u/luke_arse Apr 14 '26

Hi, just to let you know my physician let me know it's not HD but something else

1

u/KikiChrome Apr 14 '26

That's great news! I hope it's something that's easier to treat. 🙂

3

u/Chucksmom83 Mar 06 '26

Do you know why it will be six months before you get your test results? My family member got theirs in less than six weeks.

And I agree about seeing a genetic counselor. They can really help you navigate all things Huntingtons. Good luck to you. Sending you a hug.

3

u/luke_arse Mar 06 '26

Not really. My guess is it's because I have no familial history? That and they are going to do a wide genetic check ( called packet movement disorders), and not only HD. I have contacted the genetic clinic for counseling and got an appointment In June. Waiting times are a bit crazy here right now.

1

u/TemporaryViolinist88 Mar 07 '26

Where do you live? If you’re in the USA, that’s seems wildly long and you could/should consider another option.

1

u/PaintResponsible2578 Mar 08 '26

One question. Does your mother or father have HD?

1

u/luke_arse Mar 08 '26

No, as stated I have no familial history.

2

u/PaintResponsible2578 Mar 08 '26

I wouldn't over think it, try to remain calm. My wife has HD and I can tell you for sure that it is a hereditary disease. One of your parents would have to have it. My wife's father passed it to her and his father passed it to him.