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Feeling frustrated, worried & very inpatient

Hi all.

I am feeling stressed out been trying to get my results from MRI & VEP (they are in) my consultants secretary said Wednesday to phone gp as results had been sent to them and they will be able to tell me a bit before consultant sends out my letter. Did that got told nothing on system try again tomorrow and phoned Thursday nothing on system try again tomorrow. Asked this morning told to phone in afternoon. Phoned this afternoon she said nothing on system spoke to the secretary at doctors surgery she accessed the hospital records (ice or something) and said yep I can see your results here I will see if duty doctor will phone you to tell you. Then I get a call saying doctor wont tell me as it has to come from consultant and to just wait for the letter. I then phone hospital consultant secretary told her all this said has letter been done she said no and said it takes 7-10 days after results in (Tuesday) to send the letter so to call Wednesday and see if it’s been done. Why won’t anyone tell me my results?!? I said I just want to know if something found or not. I don’t need to know exactly what’s found but they won’t even do that! I Have realised I am not the most patient person and I already knew I was a worrier. Guess I will just have to wait, not much else I can do really! Rant over x

Hello,

I fully sympathise and it is very frustrating. I had a very similar experience when I had my second MRI scan early in Summer 2014. I waited over two weeks and the rang the neurologist’s secretary who said that the results were in and that a letter would be sent out soon. To cut a long story short, and after many phonecalls, I finally received the letter in September but the letter was dated in July! I had to wait all that time to find out that I had PPMS; there was no offer of an apology, of course.

Unfortunately we are at their mercy.

I hope you hear very soon but keep pestering; it is you that is being affected, after all. Don’t worry about inconveniencing anyone, they will get over it.

Best wishes

Alun

Hi Alun

Thanks for the reply.

That’s awful that they left you waiting so long. :frowning: I really don’t know how you managed to wait so long it’s doing my head in the amount of time I have waited which is nothing compared to you.

I definitely will keep on at them they will recognise my number if they have number display. Haha

x

Well nothing’s changed, I am still waiting.

Phoned Wednesday and letter still not been done she said she would chase him up for me and I have asked for it to be faxed over to doctors surgery when it’s done which she said she will do. I phoned doctors late yesterday and no fax received. I was told Wednesday if I not heard anything by Friday to call again. So will be phoning doctors this afternoon and if no fax will call consultants secretary again.

My husband snapped last night when I told him gp had no fax he said just leave it stop phoning everyone you will get the letter when you get the letter. Easy for him to say … I can’t help it hard to think of much else to be honest. I am a worrier best of times though he only worries if he has to.

X

You do need the confirmation even if you already know deep down what will be the outcome. When I was finally diagnosed i did feel a sense of relief as it put all my symptoms over the years into a comprehensible context.

It spurred me to take control and I reduced my working hours, applied for a PIP and contacted the neurology team for some physiotherapy. I see the physiotherapist regularly and I have a set of manageable exercises to follow which make me feel better even if there is no discernible physical improvement.

The hospital should not promise to fax the letter to your GP and neglect to do so. That is a very poor service and takes no account of the anxiety and uncertainty felt by you. Are they your first MRI scan and VEP test?

Alun

Hi Alun

I received the letter today. My MRI came back fine, which I am pleased with but at the same time I am no further forward. Still waiting on the VEP results.

x

I am glad that your MRI is clear but which parts did it check? You must have had symptoms which your neurologist thought were in the MS ambit.

Have you had optic neuritis or visual problems to prompt the VEP test?

The only advice that I can offer is that you book an appointment with your neurologist to discuss the results of your VEP and MRI as soon as one is available. In my case it took two sets of MRI scans, four years apart, together with a VEP test to reach a diagnosis. I was not offered a lumbar puncture, but that is always something you can discuss with your neurologist.

As I am sure you are aware getting to the point of diagnosis can take some time, and it certainly was in my case. Unfortunately, the time in limbo is annoying and frustrating as you start to over interpret every twinge or episode of poor balance and dwell on the possibilities.

I am sorry if my questions are too intrusive.

Best wishes

Alun

Hi Alun

Not too intrusive at all. I had a head and cervical spine MRI. I failed a field vision test at opticians, have eye pain and not been able to see as well out of my left eye on occasion noticed more in dimly lit rooms. I have had lots of little symptoms over years but the numbness in my left side what prompted me to keep going to docs.

Did your first MRI come back fine? Sounds like you have been through it all to get a diagnosis.

I am still awaiting an appointment to see an eye specialist as optician (since end of May) optician asked Gp to refer me

I am not really sure what to do now to be honest, I want answers but not sure what else it could be/ask to be tested for.

thanks for your reply,

I will let you know my VEP results when I hear.

Hi rally been 7 weeks since i had my mri on brain neck thoracic and lumbar still not heard anything.Have been poorly with chest infection for last 2 weeks so out of it a bit still feeling poorly but hey ho .Best wishes hun.