HAS ANYONE BEEN TO THE AUTONOMIC NEUROPATHY UNIT AT QUEENS SQUARE
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hi im having test next week for autonomic neuropathy possible POTS and nerve conduction test at the autonomic unit queens square london. it is as an out patient over 3 days. im having to travel aprox 6 hrs ( patient transport as i have severe balance and vision problems ) i live in the north west and there is no other autonomic unit than in london so they are providing NHS hotel accomodation which seems to be the norm. im very worried about this arrangement now as my health is bad and i never go out without family or friends (even then not far from home) im concerned i will be having test during the day then sent off to a hotel feeling unwell on my own as no one is able to go with me due to work/family commitments. if anyone has been could you please let me know what to expect. i realy dont want to put myself through this but my health is in decline and my doctor believes this is my best hope of a diagnosis after 3 years of going round in circles here. the consultant i saw in june was excellent and actualy listened to my extensive list of neuro problems for over an hour. its just so far to travel and not as an inpatient which i would be more comfortable with.
0 likes, 7 replies
derek76 vicky89033
Posted
Surely under the circumstance a family member could make the effeort to go with you. A relative stayed in accommodation in a hospital while her partner was having a kidney transplant. She did have to pay for it.. This was in a London hospital.
vicky89033 derek76
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derek76 vicky89033
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Be brave and I'm sure that you will be all right. I'm sure that this is a situation the hospital often have and may give you a contact number to call if needed.
Before the cuts we have now the council sent a carer to stay with my mother over night until they had a bed for her in hospital and again for a night when she got home until I could travel to Scotland.
vicky89033 derek76
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derek76 vicky89033
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I waited six months to see a neurologist in Sussex after seeing an orthpaedic consultant. None of the neurologists tests gave a diagnosis. I paid for a lumbar spine CT scan and was advised to see a neurosurgeon. It was a 39 week wait so I went to one privately. He wanted an a complete spine and pelvic MRI scan. That did not give an answer so he said that I should see a neurologist who specialied in Neuopathy. The specialist centre for that is evidently in Bristol.
There is one at Kings College in London who does one morning a week in Maidstone for NHS paients with an 18 week waiting list. That would be about a three hour journey.
He does a private clinic one afternoon a week at Sevenoaks so I have opted for that as it is just an hour and half by train. But I'm betting that he will refer me back to a back specialist.
vicky89033 derek76
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derek76 vicky89033
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I did not have back pain to start with and put that down to my change of gait when it started but now I think it all stems from my lower back.