PSP Association
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Second opinion

Hi everyone.

I went to see my neurologist on Wednesday . I explained the problems I have been having with my foot . he said it was dystonic dyskinesias . I have been referred to one of his colleagues at the institute of neurology in London . in the meantime my levadopa use has been reduced to 50 mg three times daily . I had been on 125mg four times daily and then 100mg three times daily. The foot problems were worse on the higher dose . he thinks the problems arise from chronic levadopa usage.he also mentioned deep brain stimulation in a Dictaphone recording he was doing as we sat there . never thought I'd even be considered for that given my initial atypical parkinsononian diagnosis. Trying not to get my hopes up too much though as he also mentioned cbd in his recording as well and that I have corticospinal involvement.! He also said I could take more baclofen of needed. Have been on 10mg of that due to problems in foot. Its as though one drug is causing me to take the other . all the best everyone ....

4 Replies

Glad you're getting some help, Cheekychops. It does rather sound like the drugs are chasing each other round you. I hope the dystonia gets chased away soon. Good luck. Eastercedar


Hi Easterncedar

Just wanted to say thanks for your message . yes I hope they can do something for me too. Just got to wait for appointment in London . wondered if you and your husband had a second opinion ? :)


Yes. We were lucky in getting a good diagnosis early from a very young neurologist, who basically wrote psp on a paper, told us to look it up on the internet and fled. Poor thing. I don't think she was prepared to give bad news. I did a lot of reading of course, and his GP then referred us to a specialist in Boston. I had read of a recent study from Japan, where a very specific area of shrinkage in the brain was determined to provide a conclusive diagnosis of psp, so when the new neurologist discussed that, I was able to accept it. She was very certain anyway, based on gaze and gait symptoms.

Compared with the struggles other folks have had with incorrect diagnosis and damaging treatment, ours have been so minor. I do wish me you all the best, Eastercedar

1 like

Hi cheekychops1973

I have just come across your posts from 6 months ago and haven't found anything since.I was wondering how you were. My husband was diagnosed in 2013 with CBD and as there aren't as many folk on here with CBD I am always interested to find someone.

My husband was 56 at diagnosis.He will be 59 this year.

As CBD is even rarer than PSP there is no CBD. Society as far as I know, so although they are similar there are obviously some symptoms that define them both.

Saying that , this is a wonderful site with lovely people and has been very helpful to me as a carer especially.

My very best of wishes for you and I hope you are baring up

Den B x


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