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Functional Neurological Disorder - FND Hope
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New doctor more useless comments

Went to my GP today to have a med review after the pain clinic suggested an increase in my pregabalin due to working now and being left in agony at end of day.

This doctor who I haven’t seen (saw him as my gp is in hospital Ill)... he said “I’ve been reading your notes and can see some suggestions are made. I know you have a neurologist but I recommend you stop that and take up the advice from another doctor and just throw your sticks away as you don’t need them”.

I’ve heard most things but I’m annoyed that’s in my medical notes! So I just suggested

I would love to throw my sticks away but I’m worried I may accidentally hit that doctor when they are thrown.

I’ve gone from wheelchair to crutches to sticks to working again so I don’t appreciate these flippant comments as if we choose to be this way.

Will be speaking with my consultant in few weeks and won’t hesitate to suggest a note being added to my file for others trying to suggest their own thoughts when they don’t understand FND

I know I’m not the only person as so many have experienced this but just brush it off and focus on those who know the condition

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Gosh unbelievable Andy. Managing pain when we increase or change activities is tough enough without these type of comments.

Keep strong and keep smiling .. you have done amazingly well and to be working again too 👍

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Thanks Lucy. Yeah it’s been a challenge but glad to be in new career... next battle is trying to fight dwp who are sending me for an assessment to go fulltime despite being on the permitted work programme which is phased Work due to disability but I know they’ll try throw me back in too soon! Good old battles eh

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Hi Andy

Great to hear you are back working part time. About your medical records you do have rights under the Data Protection Act to have your comments added to notes that you disagree with. They won’t remove the notes but that’s why you are allowed to add comments. I’ll check out the sections you can reference from the Act. Sorry can’t do it now as in bed. I’m trying to see if meeting up for a local group run tomorrow morning will work out. But my mornings have just become a nightmare over the last 5 months. But I suppose I won’t find out until I try. I’ll let the Organiser know so that they know what to do but also to say that if anything does happen I will bow out of the group cause I don’t want to spoil their fun.

Must meet up again soon.

Cheers

Lou

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Cheers Lou, yeah be good to catch up! Rest well

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