Talk:Paroxysmal nonkinesigenic dyskinesia

Relationship to Huntington's disease

I've just deleted the statement that PNKD has been used as a synonym for Huntington's disease. The reference for this was the whonamedit.com article on Huntington's disease, which doesn't mention the link. However, the whonamedit.com article on Mount-Reback syndrome (http://www.whonamedit.com/synd.cfm/950.html) does say that *Mount-Reback syndrome* has been used as a synonym for HD. I wonder therefore whether this is a hangover from the merger of the (Wikipedia) PNKD and Mount-Reback articles.

Neurotip (talk) 20:29, 13 October 2009 (UTC)

Not quite accurate (personal observation)

I am writing as a member of a german family affected by this or a similar disease.

We do not have high quality medical sources on the web and the following is based on our own observation or medical report(s).

I will start with a few quotes from the article, followed by some explanations on the situation in our family.

»[...] passing to roughly fifty percent of the offspring.«

We cannot agree with that. The oldest family member I know with this disease is my passed away grandfather. All of his children, and their children (me and my female cousin), are affected by it and my son will be presumably too. That is 100% of the offspring.

»Symptoms are most severe in youth and lessen with age.«

Our observation is rather different. The female family members seem to be affected less with age. But the male members (me included) are affected more. My grandfather sat in the wheelchair, my uncle is unable to work and I am currently in psychiatric treatment, not able to work, and do not know if ever again.

The source mentions a 50%-60% chance of diminishing attacks. That would be appropriate here. Uncle and mother were the only participants on a study at the Nordwest Krankenhaus in Frankfurt (Main).

Family situation

A short description of each family member's symptoms that I know of.

Grandfather

As I mentioned earlier, he sat in the wheelchair. Was overweight and had diabetes. No longer alive.

Uncle (age ~50)

Also overweight and suffering from diabetes. Early retirement. Takes pills (clonazepam) all his life. Silent and perhaps introverted and/or depressive.

Aunt (age not known)

Depressive, overweight, same pills.

Cousin (female, age ~20)

Had epileptic attacks as she was young. Took the same pills. Now, the attacks are gone and she seems to be healthy.

Mother (age ~60)

Overweight and same pills. Works and feels good (only with the pills).

Me (male, age ~30)

Currently in psychiatric treatment. Stationary and ambulant. Cannot work. I can confirm, that most common therapy and medication work poorly (until now). I will try these pills too in the foreseen future. Silent and introverted, mobbing between the ages of 2/3 and ~20. Reduced physical and mental resilience with age. Only the legs were affected in the youth.

It seems that affected persons have a higher risk to become depressive, overweight and diabetes.

I hope these observations will help someone in the future and I will try to keep them updated.

--Crstnio (talk) 16:09, 16 September 2020 (UTC)