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TOPIC: just diagnosed ... leg spasticity, tightness

just diagnosed ... leg spasticity, tightness 1 year 9 months ago #3911

hi ...

for the last 2 years i have been on an odyssey of over
20 doctors and countless theories about my condition but
no definitive diagnosis

a neurologist recently referred me to a movement disorders clinic
at stanford university here in the US, where i have been diagnosed with dystonia ...

after a fall i experienced 2 years ago, i developed severe spasms, rigidity,
and tightness in my left leg to the point where it is
impossible to bend at times ... my leg feels like a piece of wood
make it extremely difficult to walk ... i have been navigating life on crutches
for 2 years now and my formal diagnosis thus far is leg spasticity ...

my doc wants to do an EMG/NCS test followed by botox injections ...

i would love to hear from anyone who has had a similar journey and/or similar
symptoms ...

i am hopeful that the botox injections willl allow me to get my life back
and that i will be able to walk on my own without crutches ...

any ideas or comments from folks ??

i am also taking clonazepan which is not helping at all

thanks so much

christopher
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just diagnosed ... leg spasticity, tightness 1 year 9 months ago #3915

  • Janeycat
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Hello Christopher, my case is different to you I have segmental dystonia. But many here have been on similar Odyssess of years before arriving at diagnoses. Wait and see how the tests turn out. Botox works differently for different cases it seems. Some have a bit of a journey to get that right I think I would say make sure you are happy with the way your consultant or injector communicates to you through your treatment. Make notes : )
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just diagnosed ... leg spasticity, tightness 1 year 9 months ago #3918

hi janey

thanks so much ... i pray and hope i get some relief from the EMG/NCS tests
and botox

and i hope all is well with you ...

the current meds i am trying are benzodiazepine drugs and frankly they aren't doing much
good ...

i believe my doc will shift me to an anticholinergic drug to try when i see her next ...

has anyone had good results with medicine to control their dystonic spasticity ??

i am looking for any kind of relief until i can
get my botox injections

thanks, christopher
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just diagnosed ... leg spasticity, tightness 1 year 9 months ago #3919

  • Janeycat
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I think the diazepam can work. I hope the botox goes well. Just take it one day at a time. I understand it sometimes takes a few goes so dont worry too much.
Take care and good luck. Keep in touch on the forum its a good place to share : )
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just diagnosed ... leg spasticity, tightness 1 year 9 months ago #3920

hey janey

thanks ... i have tried 2 of the benzodiazepine drugs (lorazepam and clonazepan) ...
the former seemed to help a bit ... the latter not so ...

i believe diazepam is in the same class as benzodiazepine ...

i believe all these drugs work on the GABA neurotransmitter

there is another class of drugs (anticholinergics) that work on the acetylcholine neurotransmitter ...
my doc may switch me to that ...

if anyone has experience using the two classes of drugs and the relative effectiveness,
i would love to hear from you

thanks janey
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