Hi everyone.

I am 22 years old and i had a neurological exam done this week at my local hospital. They noticed twitching in my arms/face/body and that i have un-responsive eyes. They said i MIGHT be symptomatic. They have said i have to wait until 5th march to have the blood test and then get results on the 2nd april. Then if i am positive i will be sent to london to do more tests to see if i am symptomatic.
Obviously because im young and its huntingtons disease they are worried about telling me...but i made it clear to them that i can cope with my result!! yet they still wont do anything even though i told them i will find it harder not knowing!

I am so sure i am symptomatic for alot of reasons BUT i cant stand the fact that they have told me that i might be symptomatic and then not done anything about it and they wont do any tests to confirm it.
If im symptomatic i feel like i need to know...its important to me. Is there anything i can do or anywhere i can go that i can find out if im symptomatic?!

Melissa



Edited 2 time(s). Last edit at 01/26/2013 08:32PM by melissa1991.

Melissa, I have no idea about the medical system in the UK. It took years for me to even be tested in the U.S.for reasons still unknown to me. Check for a group online in your area to see if there is anything available. I know that if you can befriend the nurses here you sometime find out more information. I don't mean they aren't professional but if you ask a direct question they seem to give a direct answer. I wish you the very best.

Marsha and Steve have done a great job for us here, we are blessed.

Mike

Melissa,

If they did a Unified HD Rating Scale (UHDRS) test, you can ask for the complete results. That would give you numerical ratings for each of the components. You could have passed some tests and failed just one, which might have led to the doctor's comment.

Try to be patient waiting for the blood test. I know it's difficult. Go for long runs. :-)

Will

Hi Melissa,

Get in touch with the Huntington's Disease Association:

[hda.org.uk]

Phone: 0151 331 5444 Email: info@hda.org.uk

There is information aplenty there, including how to get in touch with your local branch/support group and HDA outreach worker.

Hope that helps,

Tom

Thanks everyone xx