National Institute of Health

[wenwill]

I just got a call from the National Institute of Health in Bethesda, MD and I have an appointment to see their neurologists on Monday, October 23rd. I am very excited, although I wish I had been able to get an appointment sooner, when my chorea was much worse.

I think I remember someone else on the SC board mentioning going to the NIH for an evaluation... If so, I would love to hear about the experience, and what I can look forward to happening. Since I don' have a textbook case of Sydenham's Chorea, I am interested in what the "top" neuros in the US will have to say. It would be nice to have some real answers for once!

Wenwill

[Lara]

Hi Wenwill,
I'd forgotten I'd read your post here about you going for that evaluation. I'm just wondering how you got on at NIH? Was it helpful for you and did you get any answers?

[wenwill]

Hi,

I was waiting to update this when I had more info. But since it might take awhile...

Very long story short - I was told that they didn't think I had SC. But they needed to do more tests before they could tell me what I had. I am going back on Nov. 29th for more tests. They have special equipment they want to hook me up to that will tell exactly where in my brain the impulses to move are coming from. Once they determine that, they will have a better chance of coming up with a proper diagnosis.

So, I am a bit conflicted... Here, I've been hanging out in the SC section for over two years - and now, I guess it is official that I don't have SC. But I will keep everyone posted as I go for further diagnostic tests later on this month.

Thanks for asking!

Wenwill

[Lara]

Gosh. All the best for sorting all this out.
You might not remember me, but I've always followed the SC Forum, 'cause my son was diagnosed with SC at age 5 and differential diagnosis of a tic disorder and autism spectrum came later. I've always been interested in following what's going on with the research in this area as well. I have met 4 older adults on different internet fora over the years who were diagnosed with St Vitus Dance aka Sydenham's Chorea when they were young, but later were diagnosed with a tic disorder. I'm talking well over 60 years of age btw. Whether these people had both or whether it really was misdiagnosed when they were young is something that's interested me. Back in their time as young children there was so much more Rheumatic Fever around that it is possible their movements actually were choreiform as children, but they've somehow been left with residual tics. ? It's all a mystery really, and I'm certainly not suggesting that's the same situation for you. I just hope they can get you some answers, wenwill, because I remember that last episode you had and it sounded very disabling.

take care there,
look forward to hearing more from you later,
Lara

[peglem]

So, wenwill, what happened?