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feeling abandoned

Hi everyone

Had first neurology appointment months ago then had MRI about 5 weeks ago. Still have not received a letter or any result. Fortunately I know that it was clear because I had a rheumatology follow up and was told it was ok. As I still have worrying symptoms I hoped I would have a follow up neurology appointment so I phoned secretary today who informed me that the neurologist has not organised a follow up appointment and would probably just write to GP. Is it normal to be just brushed to the side like this when im still left with symptoms and no further forward. Can I demand to see neurologist again. I feel really frustrated.

Hi Serina thats awful. Just because the mri is clear doesn’t mean you haven’t got something going on. If you remember I’m the same with clear mri but I do have a follow up in fact the neuro arranged that at my original appt beforeaany results back and it was always planned to be kept even if clear the only change was going to be bringing it forward if mri showed anything urgent. Ax

I’m sorry to hear you feel abandoned and I can understand why. Might it be worth seeing your GP, discussing the results and asking what the next plan of action should be ? They cannot leave you with unexplained symptoms. Hope you make some good progress . Take care Laura x

Yes Arwen im glad you have follow up, I dont understand why im being left high and dry but I feel really angry especially when Im a nurse in NHS. The waiting times for follow up are long enough but at least if I got one I wouldnt feel as bad. I feel really let down. Thanks Leora, I’ll go back to GP but I really shouldnt be made to start at the very beginning again. x

Hi Serina, I don’t know if this is helpful, but my dad had a clear mri back in 2000, and yet his symptoms suggested MS and so they did a lumbar puncture which was positive. He had ppms. It took quite a few years to diagnose. (I think it was harder to diagnose then). I would enquire or rather ask for the LP. I have my first neuro appointment next week and I will be ‘enquiring’ about a LP, if the neuro is sure my symptoms are neurological. I have ear implants in one ear, so I don’t think I can have an MRI. We’ll see. Hopefully the more knowlegable guys on here will correct me if I’m wrong in suggesting this. :slight_smile:

Hi Serina, I don’t know if this is helpful, but my dad had a clear mri back in 2000, and yet his symptoms suggested MS and so they did a lumbar puncture which was positive. He had ppms. It took quite a few years to diagnose. (I think it was harder to diagnose then). I would enquire or rather ask for the LP. I have my first neuro appointment next week and I will be ‘enquiring’ about a LP, if the neuro is sure my symptoms are neurological. I have ear implants in one ear, so I don’t think I can have an MRI. We’ll see. Hopefully the more knowlegable guys on here will correct me if I’m wrong in suggesting this. :slight_smile:

Hi,

I have been told by one other person that at the time when their MRI was ordered, they were also given a date for a follow-up appointment to discuss the results. However, different hospitals seem to have different policies on this.

I was told at my first appointment that MRIs are ordered for most patients who have been referred for MS assessment, but that in most cases, a follow-up appointment would only made if the MRI shows abnormalities. I think this might be standard practice in many areas

I don’t think you can ‘demand’ to have a follow-up, but you could certainly ask GP to re-refer you (since you still have symptoms) or to be referred for second opinion.

Hi serina, I feel for you same thing happened to me, clear mri so letter sent to gp discharged. So I went back to gp with on going symptons, he wanted to refer me back, I said leave it for now but a few months later I was back because no better and he referred me again. I’m not looking forward to the appointment but the doc thinks its neurological so here we go again. Your right thou it is along procedure when you have to be re referred it will be 12 +months before I’m seen again however perhaps the picture is clearer with time. You must go back to gp, I’m astounded that they don’t give more consideration to ones of their own profession but they don’t seem to! Hope you get some satisfaction soon Jo x

Thanks for all your replies, just to let you know i got a call from secretary today saying neuro will see me again to discuss symptoms. Now I feel he will see me and think im a nuisance. OMG cant win but i am glad. appointment is next Friday. x

Hooray I’m so glad you are being seen again even if you do feel a nuisance :-(. You’re not its reasonable to want some idea of what is going on Ax

Thanks Arwen, hope you get some answers too.x

That’s great news, you are not being a nuisance to anyone! Best of luck x