Frustrated with limboland

Seem to be getting nowhere fast!

Started with just a bad back, then pins and needle / numb right leg, then both legs, then arms too, then side of face.i was just putting up with it, trying physio, figured it was a trapped nerve. Physio said I should go to A&E, but I didn’t agree. Finally my mum dragged me to the Dr who sent me to A&E.

10 hours of prodding, poking and a few tests and head CT, they reluctantly discharged me. I was bei ng seen by 2 departments and neither of them wanted me to go home, but neither wanted to claim me. So they sent me home, with a promise of a full spine and head MRI early the next week. MRI was 4 weeks later.

in the mean time i went back to the GP which referred me urgently to a neurologist. Saw her and MS was mentioned for the first time! She did lots of blood tests and said she will see me after the MRI s had been done. Saw the orthopaedic Dr, straight after the MRI who said I was pretty much all clear from his point of view, but wanted me to have NCS,and said I should see my neuro again to review the brain MRI. After a ‘few’ call to her secretary, I was told she’s seen the MRI result and wants to wait until I’ve have the nerve tests before she sees me again. Had those last week and the DR that did them said she found no issues - had the needles in my muscles tests also, this was Monday last week.

Saw a occupational health Dr on friday last week (work initiated this) he told me I need a review with my neuro. Saw an nhs physio Monday morning (was private before) he said I need a review with my neuro ideally before he starts my physical assessment. So called my neuros secretary (she is very nice!) she said the Dr wants me to have a lumbar puncture before she sees me again, but she hasn’t signed off the pro-forma yet so can’t get an appointment until she does. Called again today and my Dr still hasn’t signed it off because she is so busy.

I know from reading some of the posts here that the waiting game is a nightmare. It’s just so frustrating. My symptoms have evolved so much since I last saw my neuro 2 months ago, and have no clue what to do. Saw my GP this week to review pain meds and try to address my tinnitus which is the worst its ever been - I thought he’d refer me to ent. But he said it’s connected to everything else and I need to see my neuro!! so called the secretary and again she said have to wait until after the lumber puncture.

sorry for the essay… Quite therapeutic just to get it all out!

Oh, that sounds like a complete nightmare, and utterly frustrating. I’m only just starting the waiting game. Make sure you phone the secretary every day - make yourself a right pain so she’ll want to pin the consultant down and force her to sign the forms! sending you lots of hugs.


Hi,from limboland too. Can’t offer much advice just sympathy sounds like it doing all the right stuff keeping in touch with the secretary s. I started this limbo game at Easter which is a lot less time than some. Trying to take attitude of pushing for results and appointments without making a nuisance ofmyself and trying to trust that if my latest scanresults were really bad neuro would be phoning me.iguess I’m resigned to waiting awhile longer but that’s only ok as relatively few symptoms at the moment. You have to listen to your body and get help when you need it. Wishing u all the best and some answers soon. Froo