The day has arrived. An appointment with the nice Neurology dr tomorrow.
I've had a room of investigations this week and being the nosey bugger I am I have asked the right questions at the point of tests and received verbal feedback on any findings, I am now concerned that neuro won't have All the information.
Yesterday I had nerve conduction studies The dr who did both the nerve and muscle studies was very informative he got very excited about a rare condition hnpp which he said had I been a child (he specialises in children) he would diagnose from the finding of the study but the adult team have to diagnose it so he was emailing the teams to recommend this and suggest that I am admitted ASAP to have the peroneal nerve released as it is trapped. So I am hoping the dr I see tomorrow has all the information.
Well by now Ibet u have searched the websites! So firstly see what they have to say tomorrow and then you can see what's possible ! Good luck xx
Thanks both. web searches he he not done all no I admit I had a brief look as everyone does. but Im lucky and can pick the brain of my work team, my consultants and fellow nurses.
Lol I remembered you are a nurse so thought like me you would have a quick scoot round the serious medical sites lol! Agree with Tilda re some sites really wouldn't be helpful though , good luck xx
You are lucky in this respect and the net would probably be too alarming or take you off on false trails perhaps so its good that so far you've had a very good doctor. Good luck for next stage. Xx
I'm extremely lucky I've had some great clinicians looking after me.
Because I have sensory changes on various parts of my body she wants to rule out ms muscular dystrophy and other nasties. She also mentioned something about RA attacking the nerves, I have a raft of bloods taken yesterday and am awaiting an MRI scan of my head and neck. I explained what the neuro physician had said about releasing the nerve in my knee she said that it can be done once they clarify what's going on. It knocked me back a little really as I assumed ms had been ruled out with the previous scan I had had done. Sigh today I wish I'd never heard OF or never had RA NEUROPATHY OR DEAD FEET.
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As an update, my friend is now going to see a neurologist privately to get the nerve conduction tests done quicker . I suggested that she look at the hnpp site too as she has had previous 'peripheral palsies' - one of them in childhood. She still has a dropped foot and no feeling at all below knee level and has just been left to get on with it by herself. The foot brace won't be ready until the end of October so she's not able to get upright at all as the broken wrist is also making things very awkward! Fortunately she has private medical insurance through her work, so she's already seeing a physio privately as there was a 6 week waiting list for nhs appts. The hardest thing is the uncertainty - we were talking earlier - and it's really starting to get her down. I suggested that as she has private cover, she push for the tests and a neurological opinion to at least rule out some conditions - and whether a nerve is trapped that can be released. She feels that they've gotten fixated on her CLL and those meds and the various specialists were just arguing about who was responsible for what whilst she was in hospital
I'm sorry that this is dragging on for you after what seemed to be a much more helpful consult with the neuro guy - I guess the only way to deal with it is to just deal with current life a day at a time and console yourself that at least they're being thorough:-} Keep posting, there's lots of support on here for you.
Cece x
Cece I really feel for you friend and the whole uncertainty is mind shocking. It's the not knowing that is so hard. I hope she gets the ncs done soon and hope the neurologist is helpful to her. Can she not have an off the shelf brace I have once called ossi foot up and while it's not too effective when I'm tired is good first thing in the mornings when I'm fresh. CLL is????
I'm just feeling sorry for myself. Missing work and my friends but I'll get there.
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wonder when i will get my new treatment .
