I was diagnosed with HD in November 2013. I was 62. My sister also has HD.

It is very interesting that if I get real hungry, I start jerking and having huge chorea. Then I eat and my body calms down. Do any other people have this issue?

Other symptoms I have are great weakness, irritability, depression and thinking slower. Sometimes my legs hurt so much. I am a missionary working with the Deaf, and so my signing has slowed. The doctor is trying to get me on the right meds.

But I find the matter of food calming my body of be surprsing.

Curt

Yes, having a full stomach does help calm the person and the chorea. My husband is advanced in his HD and feeding him is one of the ways of "medicating" him to help keep him calm. Food is a followup to his other meds and works extremely well to help calm him and lessen his chorea. I am reminded of this every morning, as his chorea is bad in the mornings especially since he has gone all night without food and a med dose. So, a large breakfast with protein is always on the menu to help as a fast effect to calming him in the mornings.

Lizzieann

Thank you. This is a super big help to me. I was just wondering because it was happening to me and did not know if food calmed the Chorea in other people. Sometimes when I eat cereal in the morning, my body starts needing food soon thereafter. I find that eggs calm my system. It would be interesting to know why food helps. Thank you. At this point in time, the doctor has me on med taking one in the morning and one at night.

Thank you and God bless you.

Curt

I watch my weight so I tend to be hungry a lot. Eating protein always helps to stabalise my blood sugar for longer than anything else.

Thank you.

I have issues with not eating. Eating more often during the day helps. All the things you mentioned get worse on an empty stomach and cereal doesn't last very long.

Do you mind sharing your cag?

Mike

Thank you

More confusion was added to my situation. There is no doubht that I have HD, but the doctor said that my chorea is not HD chorea. So he is suspicious that I have other problems also (heart, etc.?)

opps. Forgot. my CAG repeat is 41

Okay, how in the heck do you have HD and the chorea you are having is not HD chorea? My doctor thinks the same thing about me but I think that is crazy! My CAG is 43. I have had symptoms since 35 and Lamictal helped my muscle spasms/dystonia immensely. Food definitely helps calm my spasms and lifts my mood. And releases pain for a while. I also crave sugar.

Margie

double post removed



Edited 1 time(s). Last edit at 05/12/2014 07:14AM by mikee.

In response to the chorea issue I just want to say, "all Doctors are not created equal". I mean this in the sense that all are not responsive to your problems equally. I've had to consider many issues before being diagnosed. I have come to some conclusions about these experiences and without physicians being totally up front about what they are thinking I had to make some assumptions on my on and through someone who is in the "know" about HD. That is not to say it couldn't be from something else but if so, what the heck is it.

1) Consider you may not fit neatly the box making them uncomfortable with their decisions therefore they won't put it in black and white.

2) My experience is each one wants to run more test even if you've had them numerous times and they always doubt the others findings.

3) I have experienced ego issues in my opinion. They younger Docs although competent haven't seen enough of the disease to understand the subtle differences in manifestation of the disease but won't admit it. Grey hair as one Doctor at Mayo explained to me was earned.

4) Insurance and billing? Could it be?

I could go on but I found you have to be your own advocate with a Doctor even if it is a COE. COE's don't mean you get an understanding Doctor. They will make assumptions and in the process work with their agenda so to speak. If you don't think you are getting the understanding you deserve go elsewhere. It may take time but it is worth it.

Good Luck,

Mike



Edited 1 time(s). Last edit at 05/11/2014 09:58AM by mikee.

I sure appreciate your help and advice. Thank you for helping me to better understand and to remind me that I need to be my own advocate. My wife is so sweet. She goes to every dr. appoint with me. I will ask her to also be alert to this kind of thing. I should have thought of that, that the doctor is going to interpret things along his line of thinking, experience, and viewpoint. Thanks again.

I just had a blood test (again), EKG and EEG this past week.

We'll see what happens. He also increased my meds that make me sleepier, at night but seem to give me ore energy during the day, so why all the tests? Hmmmmmmm again.

Sure. It can be something else. I do know the supplemental oxygen helped but my gait issues did not disappear.

Mike

Interesting. Thanks.

Curt, I just found this thread as I was searching for "hungry" as my wife is always hungry. How she can be hungry after eating a scone (which alone fills me up), a big bowl of fruit, a smoothie with banana, soy milk, orange juice, mango or berry medley, and two scoops of soy protein... and then eat two yogurt parfaits from McDonald's... well, it's hard to believe unless you see it for yourself. My wife weighs 120 pounds and is 5'4". The stomach must have some great stretching abilities.

That is my story. The bit of advice I have on the protein side... bacon. For awhile, my wife stopped eating it as it was harder to swallow. It was added to the list with salads, rice, and nuts. It would give her discomfort in trying to swallow.

What I do is that I cook bacon in the microwave and I like mine cooked well where it's crisp and flat. Not rolled with jelly fat or anything (like it is out of a frying pan). I then put it in the fridge for a day, and I don't qute understand it, but then if you eat it a day later, it melts in your mouth with little chewing effort. Protein!

Hope this helps.

thank you for your coments and help