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I Think I Have It, Really Scared Now

In an earlier post, I wrote about experiencing involuntary movements every night as I was trying to fall asleep. Well now, the symptoms have spread into my day time living, and have increased in frequency and intensity. Involuntary, twitches and spasms of my legs, feet, toes, hands, fingers, arms, shoulders, and trunk. It seems as though it happens almost every minute, of every hour. I am beginning to panic, I am really beginning to freak out. I pray to God and hope that it is related to something else, but this does not look good. This really does not look good.

13 months ago

Dearest Samuel, I do hope you were able to make an appt. for your blood draw when you are back home.  Not to minimize your fear but ,more to offer a bit of hope, every once in awhile I suffer from noticeable spasms all over my body, even my face (which isn't helpful when you are in a customer service based occupation),  for me its just stress. My husband who is HD+ (we found out Good Friday 2005) who is in the beginning stages, doesn't have any noticeable spasms (yet) , just the now almost non-existant mood swings ( I figured out his dosages my ownself), balance (which sucks, he runs a warehouse and can no longer ascend or decend ladders) deminishing driving abilities ( VERY hard for a man anyway, but a car-guy, man oh man) and voracious sexual appetite. I hope and will pray the movements are 'just 'you stressing over your (hopefully impending) test. I also pray that  roughly 3 weeks after your test you are able to report to us that you are HD-

13 months ago

Hey Little Brother...stop preempting.....those movements could be a million different things. Wait for the results of the test before you start planning for the worst.

Stress can do awful things to the body. So many have convinced themselves that they have HD and then test negative.......settle down and get on with the procedure. Stop stressing....it only makes everything worse.

Counselling is imperative. Go do what you have to do.....there's a 50% chance you haven't got it.

Glass can be half full you know.

We're with you all the way...Jenny

13 months ago

Hey everyone My name is Carissa Im 17 yrs old and I have Junvenile huntingtons disease Ive seen that some of you have not tested yet.. Ive spent my life learning and breathing h.d my real dad has had well my whole entire life..but we didnt know bout it until i was 6 yrs old because thats when hes real dad passed away from it because my grandpa was adopted so we didnt know anything.. i have 3 sisters not includin myself.. one of my sisters her name is Judy she is 16 right now and she has it as well.. my two younger sisters are 14 n 10 yrs old.. but the younger two cant have it they have a diff dad than me and judy.. judys been showin signs since she was well 6 or 7 yrs old the doctors kept tellin us that kids couldnt have it when the researchers kept tellin us all these different things. she finally got tested possitive when she was either 12 or 13 i got tested when i was 15 her cag repeat was a 77 and mine was a 66.. our dads was a 49 my dad is deffently in tha endin stages im really suprised hes still here..!!! Yea it can be hard sometimes to deal with expecially when were the only kids who have it in colorado which is where we live.. but it doesnt bother us we live day by day waitin to see what tomrrow brings us.. we dont wnt to let it upset us whatsoever.. even though sometimes i know more bout h.d than any doctor does and thats the truth out there.. i have an amzing support system with where i live.. my family and i have been in news papers.. news channels.. magazines you can even google n yahoo our names and there info bout us and jhd its prtty sweet.. but no matter what any of you on this website are dealin with it jus make sure u can laugh bout it and learn to laugh at ur self.. or make a joke and blame it on if u twitch of if u fell down.. thats really tha main thing that keeps me goin is laughter and bein able to make jokes about i.. cuz then it wont let u get down about it.. Im prtty blessed to have this disease and have been able to hve grown up around things that most kids dont see and make choices that people usually wouldnt make or are afraid of what will hppen to them.. you know like i have a feedin tube im gettin a wheelchair n a cple months i have a cane i cnt rememory hardly anything.. i alwys am fallin.. i chokin.. its hard for me to eat.. u know theres so many lil things that are hppening but it doesnt make me any less happier than i would be... well if any of you ever want to talk about anything please just write me.. thnk you and Ill talk  to you later...

cya round Carissa

12 months ago

Carissa You are such an amazing person.  I admire you so much.  I am 33 I have hd my count is 43.  I am not symptomatic yet.  I hope to have half the strength that you do when I start showing symptoms.  God bless you.  How is Judy doing?  Last time I saw her was about 3 years ago at convention. 

I'am the one that you were jumping on bed with Veda at convention.  I am so glad I found you.

Remember the elevator, and knocking on hotel doors?  I had so much fun!!!  Are you guys going to convention this year? I hope so....

How is your mom? 

Tina Hellum

12 months ago

Hello everyone

                         New here.  Completely stressed out. Background...nurse for 15 years...still working...47 years old.  Maternal Grandfather, Mother, Uncle (Mother's brother) and half-brother all positive for HD. Increasingly symptomatic for the past two years. Compensating...and blaming all possible alternative factors...currently scheduling CAG testing...but in the midst of this a co-worker noted staggering/stumbling at work and turned it into my Unit Supervisor as "...maybe drinking or something..." and when I was open with my supervisor about the possibility of HD and CAG testing...she made it facility knowledge by the end of the day (even told a consultant who was in her office from State)...and has now has demanded paperwork from my physician stating she is worried about MY judgement...OMG...feel so...embarrassed/angry/insulted/pick an adjective...besides the fear of the actual conclusive testing itself... *sigh*

Sorry to unload. Just so depressed.

Carla

 

12 months ago

hello samuel im very sorry to hear wat your going through but after wat you told me i would deff be getting tested or thinking about it Im leaving with it and im glad that i found out because i was having signs of wat u were sayin and i didnt know wat it was and i knew my lil sister had it and me so i would either not have it or i would but the hardest thing is not knowing its hard but if i wouldnt have gotten tested i woulda regreted it. and if i didnt have it i woulda blamed myself and been soo guilty because that wouldnt have been fair considering my lil sister and my dad had it and i didnt that jus woulda frustrated me and i woulda gotten so depressed. theres so much support in tha hd community who are all my extra family and im sure they would treat u just the same you know. but its a very personal choice do wat ur heart is telling you...

Carissa

8 months ago

ay hun how u been everyones doing as good as we gotta be im getting a wheelchair n a fw weeks and i jus recently hada feeding tube but i got it tooken out cuz it wasnt working. judys judy lol shes stronger than ever she actually jus had a pretty big fall n broke two of her ribs n scrapped up her back pretty bad shes using a walker right now instead of a wheelchair n it seems to really be helping her. im not goin to school anymore im actually retiring myself so i dont have to do anything anymore besides hang out and be around my family so thats been betta but i was a senior but school n me well its jus not a good combination right now you know.. its been good to talk to you hun

carissa

8 months ago

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