The Orthostatic Tremor Forum (archive)

Hello everyone as the subject says "I'm new "
I am a carer to my 36yr old son who has just been diagnosed with orthostatic tremor.
Garry has been ill since the age of 18 yrs and over these years has been diagnosed with:
Shin splints
Hypermobility Syndrome
Chronic Fatigue Syndrome
Fibromyalgia

Now I'm thinking WHEN will it all end WHEN will he start to feel better ?

Medication is Tramadol, Ibuprofen ,Pregabalin ,Clonazepam and a depression tablet which is not very surprising with all the doubter's we have had to deal with saying it is all in the mind - including the medical profession

I'm looking for advice and as much information I can get for our next visit to the neurologist in a few months.
There's one question I already want to ask him and that is has he also got Kinetic/Action tremor as his hands shake even when lifting a cup ? "oh" and one more IS THIS A DISABLEING ILLNESS as we are having trouble with the benefit office .



Look forward to your replies Sue

Dear Sue: Trying to find the correct diagnosis is sometimes a difficult path to follow. Since you live in the UK I strongly suggest that you contact Dr. Peter Bain at the University Department of Clinical Neurosciences, Imperial College,London, UK. Dr. Bain is one of the leading experts in movement disorders.

I do hope you find an answer to your problem,
My sincere regards, Gloria

Hello Gloria
I'll write to Dr Bain and hopefully will learn more about O.T.

I've gleaned a bit of info of the Internet and find that those who do suffer with OT find the tremor goes away when walking but unfortunately because my son suffers with C.F.S. / Fibromyalgia - walking is very painful so he is in a catch 22 position.

Thank you for taking time out to reply
Keep well
Sue