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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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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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