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Old 16-12-16, 03:59 AM   #1
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Default 22 at first symptom

My grandpa mcravin died due to his shrapnel injuries from ww 2 before he showed symptoms so my dad didn't know about it. He started showing symptoms at 58 years and was forced into medical retirement. He didn't actually decide to get tested until ten years later. When I found out about it I was upset for both me and my dad but after a while I got over it. My dad's symptoms where mostly behavioral and coughing. He died from aspiration pneumonia last January. If someone has Huntington's and they are older when they have kids they might have kids that have earlier onset and more prominent symptoms. It's even worse with older dad's and that really screwed me. My legs started jerk ing when I was laying down and for a while it kept me then I started walking weird and slurring my words. Next my legs started jerk ing when I was sitting down. My hands shake really bad for about a year. It gets even worse when I don't eat. I also can't sit down for long periods of time or hold still for more than a couple of minutes and I move my feet back and forth a lot when I am standing. My walk is also worse too. I decided to get tested but I went to an evil horrible doctor. The worst thing that he said was that I should have gotten an abortion but I love my little girl more than anything else and I can't imagine life without her. I have a friend that has M.S and I made an appointment with her dr for the end of this month. I am 29 now and the thing is that I probably have the earliest onset of everyone but Juvenile huntington's is up until 20 so I am kind of in between
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Old 05-01-17, 03:04 PM   #2
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Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,149
Default Re: 22 at first symptom

I want to reply to all the people who have posted their first messages and messages asking for advice in the past couple of months – but I don’t, unfortunately, have the time. Some messages have only had one response and others – none!

ie sarahminor009 and jessipeachy

Also, several messages seem as though they are from overseas so any replies from some specific categories may not be relevant in a country other than the UK.

Hi Sarah

The term Juvenile HD and its age group [0-20] is just a reasonably arbitrary number agreed upon, or not, by some, or many, Clinical Neurologists … I think.

Some medical professionals use other terms too, such as Early Onset HD [21-35 or thereabouts] and Late Onset HD [60-95 or something similar].

There is also the CAG Repeat Count to consider. 17-29-35 = Negative for HD. 36-39 and 40+ = Positive for HD. This is all related to the age of symptomatic onset of Movement Disorder, Cognitive Decline, Behavioural Issues – and any other medical complications that may be apparent or might arise.

If you read through the messages posted here you will easily see that there are many similarities yet a great many differences. My son, for example, at the age of 29 is, seemingly, at a similar hd-stage to a grand old gentleman of 73. They have many hd-similarities and many differences, some obviously determined by the age and generation gap that exists.

Your message stated:
If someone has Huntington's and they are older when they have kids they might have kids that have earlier onset and more prominent symptoms. It's even worse with older dad's and that really screwed me.

Medically, I don’t have HD because my CAG repeat count is 35 but as an older father I passed on a mutant huntingtin gene with CAG 56 to my son. His movement disorder appeared in his early 20’s and we now realise that behavioural issues were around in his teens.

So, even though I am HD negative, I do have medical and behavioural, maybe, neurological discrepancies to the norm. I have always known my own symptoms of “me” - and that’s how we all are, on the fringes of something or other …

I hope you have had a positive\meaningful appointment with your friend’s doctor since you posted your message.

New Day; New Outlook; New Challenges; New Possibilities; New Outcomes; New Successes
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