Just did further reading. Evidently, mine is due to a dominant gene on my father's side which is good in that my kids aren't likely to inherit it because it comes from the father. My sis on the other hand would have recv'd her PNKD from either side. I'm thinking probably my mom's. I suppose at least I can sleep a little better not worrying about my kids.....assuming the "expert" was correct.

Sounds like you have so many painful illness'. I am 56 live in Ceredo WV just wesr of Huntington. I have multiple sclerosis, cervical dystonia, and spasmodic dsyphonia. Can't speak well. Miss that voice. Also back problems severe due to a scooter accident. No seizures. My brother has them he had a stroke at age 38 now 58. We are the only two children in our family and both badly disabled. I admire your desire to continue to learn and help other people. I read, but because of the brain lesions my retention isn't good. Lesions caused by the ms. I do have a cousin on my mom's side that has a form of dystonia, and one with ms. 3 cousins on my dad's side with lupus. Mom has psoriasis which is also autoimmune. I hope my children and grandchildren never experience anything like this. They are so active and so healthy.
I was to at one time. I first got sick at age38, so it seems like a lifetime now. Good luck with your studies.
Take care,
Angela

Dear Angie - Thanks for your response. I am learning that IF the experts are correct, my kids should be safe as this is a autosmal gene that is dominate and likely from my dad's side. Yes, it can be either side but odds are it's dominate and my dad's side. However, my sis's is also autosmal gene and can come from either side but is most likely recessive (mom side). So, basically, our brains do not process PROTEIN and it really screws with the neuron transmission which causes the jerk-fests that I so adore---NOT!

I do find it fascinating that my dx, if correct, always comes with other neurological issues (we both have familial essential tremors) and oddly, hers makes her more suceptible to cancer which she has battled 2x. It's all very intresting to understand even tho there is not a FIX to the mess. Understanding at least helps. I try to not dwell on the future, long term.

It can be anything my dear friend. Think back to when your symptoms first started appearing? An illness,accident, medication perhaps? a stressfull event could have triggered it. My symptoms have also become worse. I am more sensitive to sound and light and crowds.and my right foot is now turning in ( ouch) . When doctor Hallett of NIH spoke at our support group meeting, I asked about PKD and PKND. He said it had something to do with ion channels.
Take Care, and remember we are Perfectly Designed.

Andro - I WANT YOUR CAKE! LOL OOOOOO, and coffee to boot, ok? Well, according to the info at the NIH, my dx is due to a dominant gene on the autosomal from my dad's side and my sis's is due to a recessive gene on the autosomal from my mom's side. Which would make sense if you follow the birth order thing in that a "higher dose" of hormones goes into the first born, which would be me, and a lesser dose of hormones in each successive child, my sister being the last.

Planning to call my aunt on dad's side and see if anyone does this. None to my knowledge. It could've come from my mom's side, yes, it would make it even more rare but still very possible.

Heck, why can't I get that lucky like playing the lottery? ROFLOL Love to you dear. Hope you feel better soon.

Did you see my new pics of the SNOW & Christmas? Big extra hugs.

Have started developing PANIC ATTACKS and per what I've read at http://ghr.nlm.nih.gov/condition=myoclonusdystonia this is all related. How long before they go? If I take the med they want me on for PANIC ATTACKS I jerk really badly, so I am using deep breathing and thought repetition at this time.