K............nackered (hope i can say... - Restless Legs Syn...

Restless Legs Syndrome

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K............nackered (hope i can say that, but i am

gypsy49 profile image
5 Replies

3rd night no sleep after only couple hours 4 nights ago ermm... i think kindda lost track which is pretty normal for me really body got use to it after all these years . Got stuff on my mind too which doesn't help got PIP form come week and half ago bloke from wellbeing was suppose to come last week help fill it in hahaha! he drove all the way out here but knocked at the wrong door duh! a friend of mine paid £20 to come and sit with me (waste taxi fair) he's coming this week and so's my friend again.... then on Thursday got an appointment to see the neuro dr hmm... reread his letters he sent to my doctors omg..... how can i submit them to DWP for my PIP i've highlighted stuff on the letters to ask him how the heck he can put stuff like..... On examination there was no tremors at rest or on posture (I'm only in there 5 mins anyone ever got comfy and at rest on one them chairs ppfftt! i sit with me legs folded under the chair obviously he doesn't see me pacing the floor in the waiting room) No Cerebellar signs,No Bradykinesia ohhhhhhhh and i've got into a habit of not going to bed before 4am hmm showed him my sleep diary it says i try loads of times during the night to get some sleep gggrrr and i stopped taking Rotigotine (which i took yearsssssssssssssssss ago) because of side effect omg i've tried all them meds and non work for me only made RLS 1000 times worst he's so going get a gob full when i see him Thursday . sorry for the rant but how can these neuro dr's say stuff they don't understand or know no knowledge of . Anyone that has any ideas what to put on this darn form .... i did have DLA for life due to hearing impairment . sorry about lack of English grammar never seem to use fullstops much guess i babble lol . anyway thanks for reading :)

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gypsy49
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5 Replies
Highlighters profile image
Highlighters

Hey you seem to be in a bad way, I live in New Zealand and we have a very good health system under here, GPs under stand our needs, do u have a family GP, if not I would u get one so he / she can sort u out

gypsy49 profile image
gypsy49 in reply toHighlighters

Aye i have a GP but useless non know much if anything about RLS .

in reply togypsy49

So sorry you are still having a tough time. Rant away, we might not be able to help with your situation but we can listen and support you that way. I know you have tried all the meds with nothing helping you.

gypsy49 profile image
gypsy49 in reply to

Thank you Elisse . strange how we all have a rant in the early hours when there's no one about to voice it lol most probs tired of hearing about it anyway specially when no one knows what your on about . aye hopefully one day i'll get some meds that will actually work even tried telling the neuro it could be a combo of meds but he don't listen thinking he knows best hhhaahahaaaaa! he's deffo going to get an ear full when i see him Thursday .

in reply togypsy49

So have you never been allowed to try a combination of meds, ? That MIGHT be the answer for you, alot of us take more than one med, its even recommended by Dr. B . That is a shame you havent been allowed to at least try a combination, even if it rules it out for working.

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