Hi

@lepman: You need to visit a Neurologist if you suspect you have a movement disorder. They make you do a load of co-ordination tests (well they did me) MRI and lumbar puncture (ouch!! )

@ momto5: I also have Ataxia/Dystonia combination. I was originally diagnosed with cerebellar ataxia due to loss in early 30's of balance and developing an ataxic gait, I was very stiff in back and legs, then speech started getting more difficult and fine motor co-ordination.

After I hit early 40's I started getting more involuntary movements in arms and hands would flex at rest and arms/legs suddenly stiffen (like when you yawn and stretch out.. but wasn't me doing it) I was sent for another MRI and they found I had no degeneration in cerebellum since the last MRI taken at onset. so they can no long class it as cerebellar ataxia.

They said the other movements were not typical of CA and I never developed a constant tremor and have only a little intention tremor its more a jerky movement of whole arm. They have changed my diagnosis to Ataxic-Dystonic Quadriplegia (present together in all 4 limbs). Its also in trunk muscles and speech muscles and now need a communication aid for strangers to understand me.

Muscle relaxants and some other drug I forgot name of were suggested, cos I was very self conscious about people staring at my hands/arms but I put on alot of weight so have come off them to try and shift a few stone as I relaised I will burn off calories faster with the involuntary movements.

I'm trying to work out my calories my body needs (as I had dropped to 800-1,000 a day) but have no idea what I'm now burning without the meds as the movements are more or less constant and I think my body has gone into starvation mode from living off salads whilst coming off the meds and the involuntary movements increasing again.

Wondering if anyone has a rough idea of how many calories I'd burn with constant but mild athetoid-type movements throughout the day? Would 1200 calories be enough or should I go higher?


Kati