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TOPIC: Paroxysmal (episodic) dystonia

Paroxysmal (episodic) dystonia 10 months 1 week ago #4132

  • Rita.S
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Hi,

I'm new to the forum, I've joined because I've never spoken with anyone else with this condition before and am interested to know what it's been like for others.

I have paroxsymal dystonia in the left side of my body. Mostly it affects the arm and leg muscles. My symptoms have changed since I began treatment, at the moment it is more manageable. I'm 25, I've had this condition for 4 years. I have full, left-side muscle spasms, that last anywhere from a few minutes to hours, to days. Before, they usually lasted 24 hours, now it's more like 5 mins and my recovery time is much quicker. The worst one lasted 5 days of constant muscle spasm. I am unable to walk or use my left arm afterwards. They can happen several times a day to just a few times a month. The only trigger we know of is exercise, too much like walking raises the likelihood of spasms the following day.

It has taken years to get diagnosed, I've been tested from everything from epilepsy and stroke, through to motor neurone, cramp fasciculation syndrome, to psychological stress. Eventually, I heard of the dystonia society through a poster at my local hospital, and my GP referred me to a team at the National Hospital for Neurology in London. I got diagnosed last summer. It has been a nightmare, but things are looking up this year.

I'm to start a new treatment in May, not sure what it will involve, I'm meeting a team of physios and occupational therapists. At the moment, the only way to really manage my symptoms is taking baclofen, and doing physio every day, deep tissue massage to try and keep my muscles as loose as possible. They are always in minor spasm, and I have constant muscle twitches and tremor throughout the day. I can usually walk unaided but have crutches, and a splint. I was in a wheelchair last year because things got so bad and I was having the muscle spasms so frequently that my leg was permanently bent at the knee and couldn't walk on it.

We're not sure of why I have this. I would like to know if anyone else out there with the condition could let me know what it's been like for them.

Thanks!
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