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Conditions and Diseases > Muscular and Nerve Disorders Forum > Severe muscle spasms like dystonia
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Q: Severe muscle spasms like dystonia
asked by: Robrich24 on February 11th, 2009
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My 17 y/o daughters life was changed in 24 hours. She is having severe spasms in her low back moving into legs & arms. Looks like a violent seizure. She can communicate and take commands during episodes. Looks & sounds like dystonia. Nothing has happened to bring this on. She now walks like she has polio. She was a normal active cheerleader and dancer. Our DR is saying it's anxiety. I think it it more than that. We hit the ER 2 days in a row via ambulance. It is that bad. 5 days in hospital. She's out b/c every test they have run has come out negative. She is still having them. Has complained of low back pain for sometime now. She no longer has control of her own body. It is in control. There are no parallels to when and how they happen. They can last from 4 to 40 minutes. She has had as many as 30 in one day. She screams out in pain while she is twisting into unfamiliar positions. Please help us figure this out. Thand you
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mominashoe
replied on February 11th, 2009
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Maybe you should try going to a homeopathic doctor and getting a hair analysis and blood work to check for parasites. Maybe a natural doctor would have more ideas as well.
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DaisyMay7
replied on March 26th, 2009
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your poor daughter
Please Mom, somehow, someway, get this child to a GOOD neurologist. Keep going to neurologists, until someone tells you what this is. Don't accept "anxiety" as an answer.
MRI's, CAT scans, blood work, EMG's, EEG's, should all be part of this child's examination. Do not accept less than a diagnosis, and some answers. You will be glad you pursued a medical answer for your daughter. I would be remiss if I did not mention the power of prayer. Even if not "religious", ask our Good God (Jesus) to help. Do not stop asking, until she is better.
God bless.
Kathleen
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mominashoe
replied on March 26th, 2009
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I just heard of a case very similar that occured due to a certain birthcontrol pill that has now been banned by the FDA. Maybe this is the cause of your daughter's problem?
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larrywiech
replied on May 4th, 2009
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16 year old experiencing same
My 16 y/o daughter is experiencing many of the very same symptoms. Has been 6 months. No specific physical event to explain. Was active in field hockey. Was near but not directly related to a stressful event. Never taken birth control. Has been seeing neurologist and pain team with physical therapy, pschycology, accupuncture and medical monitoring. Currently on lyrica, cymbalta and flexril. Not 100% but managaging for most quality of life.
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tamsinemilyjane
replied on June 17th, 2009
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Re: Severe muscle spasms like Dystonia
Hello there. I am SO sorry to hear about what is happening to your daughters Robrich and Larryweich - it is absolutely frightful. It does NOT sound anything like anxiety Robrich, grrr! I know because, if it is the same illness as mine, it happened to me too. One time I was carried into ER, body writhing, blood coming from my mouth and a pulse of 140 and dismissively they said I must be having a panic attack. I don't think so. I was 20 years old and, also, there seemed to be no obvious precursor. After a year or so I was diagnosed with Paroxysmal Dystonia (or PD/PNKD) by a top Neurologist. I was very fortunate. Once I was started on Topirimate (Topamax), the attacks began to taper off. It had got to the stage where I was experiencing 3 severe attacks a day; each attack would last for 2 hours or so and would leave me listless and terrified as I never knew when another would happen. It was the most painful experience of my life: my feet would turn inward and could not be moved by two grown men, then then stone-like spell would spread upward through my legs. My eyes would roll into the top of my head and stay there and my head would fix as far back as it could go. But the worst was my jaw: it would twist sideways, almost dislocating itself, my teeth shredding apart the inside of my mouth until it bled. I had to have my four wisdom teeth removed.
I have been on Topamax for 6 years now (200mg a day) and now only experience a tightness in my left foot/leg, which was perviously a warning symptom before an attack. But it still scares me.
Currently, through my neuro., I have been gradually adding in a new anti-seizure med called Lamotrigine until reaching 200mg; and will now very gradually begin to reduce the Topamax which is terrifying! Topamax is known to cause birth defects so one is not advised to begin a family on this drug. Lamotrigine is a slightly safer bet. I cross my fingers, hope and pray that Lamotrigine will keep me as safe as Topamax has.
And I hope that your daughters find the best in specialists and medicines, as I did, in order to reach the quality of life that Topamax gave me.


All the best, Tamsin x
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stapleton123
replied on August 14th, 2009
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Im very sorry 2 hear about your daugther.I feels the problem has been increasing with her age, you try to give her mental support which she requires mostly.Consult a good natural physician.
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