Looking for advice on getting care changed

Hello. i am new here and appreciate any advice.

  • 3 years ago i had sever Optic Neuritis in left eye (within 5 days of noticing a small blurry patch i lost all vision with no light response). I was eventually admitted after MRI result showed it was inflammatory and blood tests had ruled out some other things. I was admitted to hospital for IV steroids discharged next day and came back two more days for them. Over 6 months some vision came come back but as of today i can’t do colour tests and cant read with it. I manage fine with one good eye. Whilst in hospital I was referred to a Neurologist (who explained about MS). Since then i am diagnosed with CIS and have been seeing them nearly every 6 months since then as they keep a watching brief. This includes annual MRI and a LP. I was told by a mat cover neurologist that my LP came back fine, this was later corrected by Neurologist later who told me i do have the bands in spinal fluid and not in blood. I’ve had some suspicious episodes in my 20’s and often have tingling etc in feet and sometimes hands etc.

  • Last November i had pain and flashing in my other eye, i was panicked and went to hospital but it settled by the time i got there. i called my neurologist and as i due my routine MRI in the next week she said she would check it when it came in adn she would call me if she saw anything in it. I did not hear from her so assumed all was fine.

  • Three weeks ago i had my next 6 month appointment. it was someone covering for my usual neurologist. he asked me to talk about my symptoms (clearly not looked at anything in my file). I told him i was curious for him to check my last MRI results as i had it last year but not heard so wanted to know for sure what it said. He said, you have two leison like before. i told him that’s interesting because i only had the optic nerve one before. i think at that point he realised the situation he was in… i.e. telling a well informed person in offhand way they have another lesion which with my history and positive CSF probably means a diagnosis of some sort. The new one is my spine. Because of the severity of my ON i asked how long it was to check it was not very long in case it would be more indicative of NMO spectrum rather than MS. I reaslised he was going to be non commital there and it was kind of awkward, so i asked what happens next and when. he said they would want imaging specialist to look at all my images and to chase a missing blood test (this test has been been done once and never came back, and now this next one is done and missing) and my neurologist would want to look at everything. he said i would hear from them within three weeks.

  • three weeks is up. i’ve heard nothing, but i now recieved in the post an appointment letter for 6 months time again. I called the hospital to check if there is anything in the system heading my way - other appointment letter, or letter confirming findings, or referals etc… chap said he could not see anything more. i explained i was feel anxious to know what next steps are given findings of latest MRI. he said he would ask the Dr i saw to call me but he might not be able to because he is very busy. He said i should get a letter maybe within a week.

  • i feel i have lost trust in the hospital due to the initial delay in assessment and action in relation to my eye (i was sent home over weekend without MRI being done during which time i lost all vision as i told them i would - but i accept maybe being given steroids sooner might not have stopped it being any less severe, and letters to my doctors had the wrong dates on about when i was first seen), lack of communication between the ophthalmology and neurology dept (i take copies of their letters to each other every time), repeated missing blood results, being given the wrong information about my CSF, and now being told casually i have new lesion and no follow up despite being told it would happen within three weeks.

  • my question is, has anyone had luck in requesting to be transferred to a hospital of their choice by the hospital they happen to be with (i did not choose, its all been with the same one as i was first admitted via A&E), or via their GP and how did you approach this? my hospital only has tiny team and i am concerned about my care. I feel quite stressed because i dont know if am neurotic or i am being reasonable and fair. hard to know when i dont know what is meant to be happening and how to judge.

thanks for any thoughts

I was under the care of my local hospital but like you I lost faith a bit. I went to see an ms specialist privately without a GP referral. The specialist then wrote to my GP with his recommendations, one of which was that my care at my local hospital should be discontinued and I should be referred to him at the specialist Neurology hospital he works at in London. My GP agreed and referred me. Best thing I did.