Hey everyone I gotta CAG 41 from mother...

My twitches were HD after all..... I was 99% sure it was as bit different from stressy twitches...and other strange feelings...

So I guess youre all stuck with me on this forum for a while longer!!

Have a peaceful day...

Lorraine

Sorry to hear about the results, glad you are with us.
Paula

I've been *thinking* about you, Lorraine. So sorry to hear of your positive result....((HUGS))

Sorry to hear of the results. Mostly I think you are stuck with us.. like the two sides of velcro maybe...

I'm really sorry, Lorraine... take your time now. We're here for you.

Luz.

Lorraine, I'm so sorry for your results. We are all here for you!

Michelle

Lorraine,

That's bad news, but your CAG is on the low side of the HD penetration range. There are many things that can be done to slow progression. Keep your spirits up and talk to us whenever you want!

Will

Thinking of you.

I am so sorry, Lorraine. We're here for you. It can take awhile to adjust to the news but you are a strong person and I know you will come out fighting.

So sorry to hear of your results. 41 is not a bad number but I know it all sucks doesn't it? We're here for you.

Lorraine, I'm sorry the results weren't negative, but I'm glad you're here on this forum to both give and receive support. Best of luck to you.

Sorry about your test results. HD is usually a long long disease, and even though you are angry and sad now, you will find that most of your twitches will go away except when you are under stress. You need to find a plan you believe will help like nutrition or aquatics or music and find a support group. Good luck

Dusty

Hi everyone thanks for kind words and wishes....

Yeah I was pleased witha 41 score in fact the consultant was really upset to give me the news and I was

"WOW a 41 Mothers a 44 maybe my kids will be 37ers......great news!"

and he didnt know what to say, just stared at me.... well I had told him I felt symptomatic so he should not have been surprised that I was pos....

Eric :- if i gotta be velcro I would like to be the bit with the sticky out hooks... you can be the fuzzy hairy bit ;p

DustyB :- I have worked out recently that when im stressed the twitchy thing goes mad... its like im injected in the feet with adrenaline.. quite unpleasant and worth avoiding stress so as not to feel it...... and im a bit sad but no longer angry... the angry in me has been gone for a while now..... I know its long disease cos my grandmother died from it and my mother is nearly dead from it... she had symptoms in 40s and is 67 now

Im already on the full wack of suppliments that Will and Sarah take and I read, cook, garden, ride my bike, bit of yoga and drive around the thrift shops buying junk to sell in my Vintage shop...so Im doing ok right now in fact apart from the dodgy DNA and poor old Mum on her last legs I got quite a nice life.

Need make dinner now laters.

Lorraine

Hi Lorraine,
I just have some questions reguarding your twitchings. I have had them for quite sometime and had done some searching for benighn fasiculations. There are many medical reason for them as Im sure you know. They come and go, but being at risk, its always in the back of my mind. Did you have any type of abnormal movements and would they be constant?. My dad was the carrier for the gene and I am 46 now. My brothers seem to have developed onset in the 20's and 30's. My oldest brother now 51, has had HD 17 years. What were some of your other symptoms that you may have thought were reflective for HD. Im glad that you have us here and I hope you can find comfort and caring on this forum. All my best for you.

A.

I am sorry to hear of your testing positive for an expanded gene . that's the pitts . I wanted to mention that many in my family that would have had HD , lived long and relatively great lives , until their 70's and 80's and 90's . So I wish you well and continued strength to cope with your challenges . all my best. db

Hi Lorriane - Sorry about your results but I love your attitude! Your number is low and you are doing all that can be done. Glad you are here to share!

Regards twitching question above... I think I probably have BFS type anxiety induced rapid muscle twitches as well as HD type ones....

My toes actually "move"around on their own as a result of deep twitchings in the arches of my feet... also in the last year I have numbness in feet legs and in my back and associated tingling and buzzing feelings.... I had hoped this was all anxiety related .. also
I have had "brain fog" for about 10 years...I was a computer analyst/coder for 20 years but I ws defo finding it more difficult to do that detailed level of thinking.... I had to check everything 10 times and even then it would be wrong at times.... Also had depression for years and anger issues on and of ...so really a combination and lots of small clues not just twitching....

If its bothering you why dont you consider testing?


lorraine

Thanxs Lorraine, just trying to get some feedback to see. I had asked the question before, but I guess everyone has a different set of symptoms, or so it may seem. I have thought of testing, but haven't come to terms with it. I think if was to have a family that truly would be my only motivating factor. I may do it at 50, as this was when dad showed the physical symptoms. I am assuming you are in your late 30's to 40s, based on your mom's age. Sorry you have to see your mom suffer. It was the worst time in my life, seeing my dad that way. But I did and came out whole on the other side. I think it only made me stronger, because then both brothers got it a few years later. My eldest still living some 17 years into it. It sounds as though you will be just fine, you have a lot of stuff going on to keep you busy for some time. Thanxs for sharing your early symptoms, I haven't experienced them, but thinking back I can remember my dad having many of those type complaints. Take care.

I'm so sorry Lorraine, but yes, at least it's good news that it was a contraction from your Mom's #.

I hope you can get to peace with this ASAP, and then feel BETTER once you're past the testing stress.

(((HUGS)))

Hi Lorraine. I love that you are not going to take this sitting down. You have already done some wonderful things for your health and I encourage you to keep up the great work.

Thanks for letting us know. I'm sorry it came back positive.

Patty