Only recently joined though have been a long time lurker. To begin I have been observing this site not because I have any known family history of Huntington's but having been having some problems for sometime now and when I consult Dr. Google it often brings me to this particular condition. I should add as well when I say no family history I am very familiar with my dad's side of the family as I and my sister was raised by him and can say with 100 percent certainty no Huntington's at all. Where things get a little murkier is my mother left us young and passed at 52 from a heart attack and she was adopted. I had very little contact with her growing up and at the funeral at 25 was too young to even think to ask what other medical conditions she may have had. Fast forward 20 years later it is now too late to even find out. I no longer know how to contact anyone that knew her.

As further background I should add that I am from Canada and although our healthcare is supposedly "free" and pretty decent insofar as good solid trained healthcare practicioners (many educated in the US) and medical technology and such...healthcare here that is not acute is a bit what you could describe as "rationed" and access can be a problem when you are in a hurry. Due to budget constraints it is sometimes difficult to get a doctor to take your problems seriously enough to refer you to a specialist. Down here you also cannot refer yourself to a specialist either...you need a GP to do that.

I guess in my long winded what I am initially curious about is what is actually meant by "twitching" when it comes to HD specifically? It seems to be a catch all term and used often . Does twitching in regards to HD mean those little muscles that you can sometimes see and feel jump up and down under your skin? Like a involuntary contraction of a calf muscle or shoulder muscle or a twitching thumb sometimes? Or in the context of HD does it mean total involuntary movements of whole body parts? I suffer from both. Little widespread muscle twitches virtually all over my body from time to time during the day when I am awake. Then when trying to fall asleep limb jerks like full blown foot wiggles...arm jumping up...head snapping to the right or left...trunk movements...jaw opening and closing involuntarily? These are not my only symptoms but seem to be a good place to start. And I am ok with anyone on here telling me this post is a waste of your time and to get lost...but do hope one or two can provide some insight as am truly concerned...Thanks.

Hi Ken,

Welcome to the site. I am in Ontario and went through the diagnostic process with my spouse so I could offer some guidance on the Ontario HD experience. It probably is not much different that anywhere else in Canada. My spouses first symptoms were difficulty sleeping, slower mental processing, and irritability. He would twitch his fingers as though he was playing the piano, and could not keep a steady pressure on the car gas peddle.

First get your life and disability insurance in order and do not say anything about Huntington's Disease. In your case you really don't know if there is a history of HD so do not divulge your suspicions. As of two years ago, the only company I am aware of in Canada that does not specifically ask about HD is Blue Cross.

Next see your Family Physician and ask for a referral to a neurologist to eliminate other diseases such as Parkinson's, Familial Tremors, etc. Tell the Family Physician that you know nothing about your mother's health history and describe your symptoms. Take some printed material with you that describes HD to the Family Physician. Family Physicians do not often see Huntington's Disease because it is rare. There is a Physician's Handbook someplace on this website.

Then ask the doctors for a referral to the genetic counselling/testing centre. In southern Ontario they are at Hamilton Health Science Centre (McMaster University Hospital), London Health Science Centre (University of Western Ontario Hospital, North York General Hospital, or Ottawa Health Science Centre). There are others on this site from Canada so if you are in a different province perhaps they could help out.

My spouse waited 6 weeks from seeing the Family Physician to seeing the genetic counsellor and getting the blood drawn. We asked for a blood draw the same day as seeing the genetic counsellor. We waited 8 weeks for the results which is pretty standard anywhere. The day of the results the genetic counsellor and a neurologist with a specialty in movement disorders saw us. We were offered counselling from a staff psychologist immediately.

In the meantime, the Family Physician also made a referral to local neurologist, and arranged for an MRI. The Family Physician had an HD patient many years back so he knew about the disease. When the test was positive the Family Physician made a referral to a Psychiatrist. In all it took about 4 months to get everything in place.

Doctors in Canada receive excellent training, among the best in the world, although it is sometimes challenging to get a diagnosis if you live outside of the major population centres. Lastly, remember that HD is a slow progressing disease and although I understand the shortage of doctors we experience in some areas is frustrating, they do try hard. Having to wait a little isn't going to change the outcome. Lastly be sure you are really ready to hear the news that you a gene positive. This test can be a life changer.

Thank you so much for all the valuable information Concerned partner You took a lot of time to write this and I truly appreciate it. I am keeping note of everything you wrote believe me but inwardly also hoping I am not quite there yet. But your heads up about the practicalities before getting tested should it come to that is also well appreciated. And I agree Canada has the best Docs in the world. I live in Alberta by the way.

I am still seeking a more definitive explanation though of the whole "twitching" aspect of Huntington's and hope to keep this thread to that query specifically. "Twitching" as I mentioned earlier can mean anything from your eyelid doing that funny thing once in awhile to whole body parts moving. As well twitching seems to be experienced by the vast majority of the population at one time or another due to many factors like stress and such. How does one differentiate that kind from the type that people with HD experience?

I doubt that any of us can define or diagnose your twitches, we are not neurologists. We can offer support and advice, and concerned partner gave you very good advice. So I personally do not even want to go where you want to go with this. There could be a hundred and one reasons for your twitches, including stress, and only a neuro can tell you what they mean.

I agree. I hope I have not offended anyone by this thread either and if I have I sincerely apologise. Am just a little concerned is all. The moderators are more then welcome to close this thread if it is not useful. Thanks to Concerned partner and Barb for taking time to respond. Cheers

There is no need to shut your thread down, good heavens, but, asking specifically if your twitching is hd, we can't answer that. If you ask if it could be a possible symptom of hd, then we could say maybe yes, or maybe no, or, maybe ton of other reasons. But you didn't ask about possible symptom. You want to specifically know if your twitches are hd. That's when I get upset, when a person asks a question that is so specific, that only a doctor, I repeat, only a doctor, can give you a diagnosis for.



Edited 2 time(s). Last edit at 08/15/2013 08:35PM by Barb.

That is my main reason for suggesting that the thread be closed down. If it was upsetting to people in any way shape or form in the HD community then I want it to be shut down. I came on here as a shot in the dark. I asked a very specific question I agree and in retrospect it was not very reasonable or fair. You are right Barb...only a doc can answer. I will take the route Concerned partner shared from the Canadian angle and investigate further before posting again only if I am a 100 percent sure I need to be on here. Thanks for the much needed shake of the head Barb