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Chorea - how long can it last?

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Unread 10-19-2012, 12:56 PM   #1
simkau
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Default Chorea - how long can it last?

My brother, now 23, has been suffering from a movement disorder since 2001. Doctors say that he is suffering from Rheumatic/Sydenham's chorea. However, I have always read that this kind of chorea is self limiting and usually last for and average duration of nine months; in few cases up to 2 years; but in my brother's case it has been there for 11 years (8 bed-ridden years)!!!

Back in 2001 (he was 12), we observed slight movement in his hands and a bit of clumsiness while eating. We thought he was just being careless. Gradually we started seeing movement in his arms and legs and in 2004 he had such a violent movement attack that we had to hospitalize him. He couldn't even sleep for few nights then. After this occurrence, he could hardly take a step by himself and his speech became unclear too because of movement in his jaws. My mother has been doing everything (bathing, feeding) for him since then.

Since then he has improved somewhat; he can now walk around in the house(not a usual walk like a normal person). However, we have not seen any improvement beyond this point for years now. PLEASE LET ME KNOW IF YOU KNOW OF ANYONE WHO HAS BEEN THROUGH THE SAME SYMPTOMS AND IF THEY HAD A MORE CONVINCING DIAGNOSIS.
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Unread 05-13-2013, 09:07 AM   #2
SophMc95
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Quote:
Originally Posted by simkau View Post
My brother, now 23, has been suffering from a movement disorder since 2001. Doctors say that he is suffering from Rheumatic/Sydenham's chorea. However, I have always read that this kind of chorea is self limiting and usually last for and average duration of nine months; in few cases up to 2 years; but in my brother's case it has been there for 11 years (8 bed-ridden years)!!!

Back in 2001 (he was 12), we observed slight movement in his hands and a bit of clumsiness while eating. We thought he was just being careless. Gradually we started seeing movement in his arms and legs and in 2004 he had such a violent movement attack that we had to hospitalize him. He couldn't even sleep for few nights then. After this occurrence, he could hardly take a step by himself and his speech became unclear too because of movement in his jaws. My mother has been doing everything (bathing, feeding) for him since then.

Since then he has improved somewhat; he can now walk around in the house(not a usual walk like a normal person). However, we have not seen any improvement beyond this point for years now. PLEASE LET ME KNOW IF YOU KNOW OF ANYONE WHO HAS BEEN THROUGH THE SAME SYMPTOMS AND IF THEY HAD A MORE CONVINCING DIAGNOSIS.
Hello,
I was hospitalized in November due to severe strep A infection and noticed strange movements about 3 weeks later. They worsened rapidly and so I went to my doctor who told me it was probably just anxiety, however I was not anxious nor have I ever had any anxiety disorders. The movements continued to worsen and 3 days after my visit to the doctor I was hospitalized. I received 10 days of iv antibiotics and then switched to oral antibiotics. I had my tonsils removed as they were storing strep A. By this stage my movements had reduced greatly, I could walk around normally but I got tired extremely easily and that's when movements would begin. I slept about 3/4 of every day and everytime I began to tremble I lay down and found that this helped movements to stop rather than escalated into full attacks. The doctors in my hospital had never seen a patient with Sydenhams and were unsure as to what I should do to recover. I was given a 4 year prescription of penicillin to take twice a day until the age of 21. This made me even more tired, it was at the point that I couldn't have a conversation without needing to sleep after. My mother's friend is a consultant working in Germany and she helped us greatly. She recommended alternative treatment. I went to Germany and saw a doctor who specializes in western medicine but also homeopathy. He recommended that I stop the low dose daily penicillin and use strong antibiotics when I get an infection, to get bloods checked every month and then he suggested I boost my immune system with many different supplements and health shakes etc. To minimize the severity of the chorea he gave me a homeopathic medicine Tarentula Hispanica. I never really believed in homeopathy but I am telling you this has worked wonders for me! I take it once a month and my chorea is about 85% better, I see the difference greatly because at the end of every month I start to have much more chorea and then I take the medicine on the first of the next month and the chorea is almost non existent. I am still extremely tired but much less, I cannot go to parties, concerts, work or go to school etc. but I can go to get coffee with friends, go into stores and I'm even attending 3 classes a week. The chorea comes when I am especially exhausted or when I am nervous or excited. Your brothers case sounds much much worse than mine but I urge you to try homeopathy to try to reduce his chorea because it has been life changing for me.
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Unread 01-23-2015, 10:05 PM   #3
Angii
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Default Chorea

Both of yoru stories have been very informational. I was diagnosed with Chorea yesterday. I am awaiting an appointment with a neurologist. Typing is difficult for me. I had a twitch or shrug with my right arm/shoulder for about 4-6 months and 3 days ago things got so much worse and i couldnt keep my arm from moving everywhere and my left arm/shoulder started doing it too. By the time i got to ER it was really bad. getting upset makes it worse for me. They dont knwo why this happned , what caused it. I am 44 years old. I have read like you that is can be treated and for most disappears in less than 2 years. I am really frightened from whats going on and not getting answers from md. Any information is appreciated. Thank you.
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Unread 01-23-2015, 10:13 PM   #4
Lara
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Hello Angii,

Welcome to the NeuroTalk Support Groups.

Did the doctor call your diagnosis Sydenham's Chorea or simply Chorea or that you had Choreiform movements?
There are many different reasons a person may have chorea.

My son was diagnosed with Sydenham's Chorea at aged 5. Differential diagnoses were made some 5 years later. (long story). He was extensively tested at age 5 for many different causes of choreiform movement disorders including Wilson's Disease, Brain Tumours, and Huntington's Chorea plus more.

Jones Criteria are used in diagnosis of Sydenham's.
http://reference.medscape.com/calcul...osis-rheumatic

http://www.neuro.it/documents/materi...LANDRINI_5.pdf
Curr Neurol Neurosci Rep DOI 10.1007/s11910-011-0202-2
Differential Diagnosis of Chorea Ruth H. Walker

http://emedicine.medscape.com/article/1149854-overview
Medscape - Chorea in Adults
updated Oct 2014

I'm curious to know if you've been ill in recent months or had a "strep throat" in recent months? GABHS [Group A beta-hemolytic streptococci] or if you have any other symptoms apart from the movements?

I really have to say that I'm so sorry you're dealing with this.
It would be extremely worrying and also extremely difficult to do things in daily life.
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Last edited by Lara; 01-23-2015 at 11:09 PM.
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Unread 01-23-2015, 11:23 PM   #5
Angii
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Hello, Thank you for responding. How is your son doing now?
They simply said Chorea. Since June, I have been in extreme pain with back and neck injuries flaring up. I have had 9 back injection in 6 months, and just last week 1 neck injection (first and last). Intersting, the twiches in my right arm started about 4-6 months ago.
Other than that, no illness recently. The hospital ran blood work to check for bacterial viruses, elecotrolites, potasium etc., which all came back fine.
I have read online tonight that epidural steroid injections can cause chorea. They never helped, not even for a day. So I am wondering if I never get another one, will this go away? I havent seen a neurologist yet, waiting for appointment.
Thank you so much for the links, I will read them now. I dont know how I am going to be able to work on Monday, I type all day at work. I had to leave Wednesday when this all happened. Again, thank you for responding.
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Unread 01-23-2015, 11:34 PM   #6
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Interesting. I have never heard of epidural steroid injections causing Chorea.
I only know of it as a condition involving the Basal Ganglia in the brain.

Have you ever looked at a video of someone with chorea? There are some on YouTube.

It might be useful for you to do that to see if your movements are like that.

My son is fine. All grown up now. He didn't have any heart involvement with his Rheumatic Fever, so he was lucky. He does have other conditions that affect movement though.
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Unread 01-23-2015, 11:43 PM   #7
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I have went to you tube and watched a few videos and one video was very similair to my symptoms. She was having arm spasms just like mine, however she couldnt sit still either. IN most videos their symptoms were worse than mine. And mine come and go but guet worse when i try and type, or grab the mouse, or try and write and if i get upset, it gets really bad an dmy head starts turning to the left. All this motion is making my neck worse and my shoulders and back muscles sore. Odd I know. I am not sure that the injections did cause it, but i found where 2.7% of chorea (induced) cases filed with FDA were steroid injection related. I just had one in my neck last week and things got bad this week. I thought I was better today, really, until I sat down to do research online. I took 2 videos to show my Md and Neurologists. Is that a good idea?
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Unread 01-24-2015, 12:08 AM   #8
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Yes, that's a very good idea to take the videos with you.

If you are already in pain bad enough to need those injections it must be awfully painful having the movements now as well.

p.s. you could also look in PubMed for drug induced chorea.

I do know some drugs can cause it but I wasn't aware that an epidural steroid would be one of them. Unreal.
It'll be good to see your Neurologist and really get to the bottom of it all and hopefully things will improve for you.

The Neurologist will probably do more tests and get all the previous test results together and try to determine if this is indeed a Secondary Chorea and go from there.
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Last edited by Lara; 01-24-2015 at 02:14 AM. Reason: added paragraph.
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Unread 01-24-2015, 12:30 AM   #9
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Have you checked out the forum search feature?

http://neurotalk.psychcentral.com/search.php


I just found this on the TOS Forum

http://neurotalk.psychcentral.com/sh...ea#post1039202
Cerebellar Thoracic Outlet Syndrome (CTOS)
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Unread 01-28-2015, 08:42 PM   #10
Angii
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Thank you, I will look right now.I went to see the Md who gave me the injection, he was rude and angry that I would even suggest there might be a link between the injection and Chorea like movements. Said he couldnt treat me any further until I am released from a Neuroligst. I wasnt accusing at all, I showed him the videos and the reserch i had found online. Very frustrating to say the least. Thank you for all the information and support.
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