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Struggling to get my latest MRI results

Hi guys

I have MS and I am under medication (Tecfidera). I follow a standard regular monitoring programme with regular MRIs, blood tests (for Tecfidera) and nurses appointments. I am followed at Charing X hospital, London. I had my latest MRI at the end of July with a neurologist appointment planned at the end of September to go through the results.

I have now been told by Charing C hospital that my neurologist appointment has been moved to February 2018!!! I obviously can not wait until then as I am:

  • extremely anxious about the results - my last MRI showed some stability while all previous ones showed the illness spreading.

  • February should be roughly the time for my next MRI

I have been in touch with Neurologists secretary and been told that they were looking at potential options to reschedule…no progress so far.

What can I do to speed up the process? Can i obtain the pictures of my latest MRI from NHS (and get them analysed somewhere else - privately)? Can I complain about the poor treatment I am receiving and the sudden change in practice?

Anyone else experiencing the Charing X disaster?

Thanks

Alex

I am usually copied in on letters sent to my GP after consultations so perhaps the neuro has advised them of your results. No harm in checking!

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They cannot refuse you copies on CD of your MRI under the freedom of information act.

Who you get to analyze them is another matter. If you don’t know a friendly Neurologist; the only possibility is to see one private and get them read. Shame the lovely Rizzo is no longer on here.

George

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Hi Alex,

How do you feel yourself Alex, is there anything you find harder to do??

How are your symptoms - better or worse?

If you are deteriorating, I tend to think you would notice it without knowing the MRI results.

And awful about the long wait.

Fay

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Hi guys

Thanks for your replies and suggestions. Really appreciate it. My MRI has not been analysed yet according to the secretaries. I am now calling everyday to get an update. Will keep you posted.

Is it easy to transfer from one hospital to another one?

@Fay, some things are better and others (my balance) are worse. The “not knowing” is killing me.

Thanks guys

Take care

Oh dear we cant have you so upset over this, you will make yourself ill.

You know when i had an issue moons back i said ok, can i see you privately, at the time the cost for 30 minutes was 80.00, i know it has now gone up to 120.00, but from having to wait several weeks to see my neuro i saw him in TWO DAYS lol.

So perhaps if you had the means, you could ask to see him privately.

I am sure the MRI has been analysed the radiologists do it very quickly and perhaps its just not got anythig on it to worry the neuro about and you are in the wait pile. I know annoying but they have so many to see hundreds, i expect they do have a priority system.

I know others who have felt their MS had worsened yet on new MRI they find in actual fact it had stabilised its weird but that is how MS goes, and the more you worry about the results the worse stress you are under and the MS will give you a reminder all by itself.

Try and relax and the answers you seek will be with you and I am sure you will be fine. xx

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I had my last MRI in May - I was feeling pretty well at the time and had no concerns about new lesions etc etc. YESTERDAY I received a letter with the results of said MRI - no new lesions, nothing to worry about - which is great. I am in the middle of a flare up though and I feel like a sack of shit (how DOES that feel I wonder!). So - i’m with Crazy Chick - no point worrying about it because MS seems to do the exact opposite of what you feel it should be doing. Cue music Que sera, sera…whatever will be, will be…etc. etc. etc.

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But you already know - you have new symptoms. So a little worse - but your balance may improve.

I wouldn’t hang on the words of the neurologist - re. progression - just deal with the symptoms as they arise.

For ataxia -physio can help.

MS Therapy Centres - can help you with balance problems basically - physio and walking sticks.

Or ask your MS Nurse/GP about physio for balance problems.

Good luck.

Fay

MS does what the hell it wants, when it pleases. Follows no rules and is not necessarily related to what can or cannot be seen on an MRI.

MS is a #>+*

Sue

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Hi Alex

Bend the ear of anyone you can get to.
Above all, Neurology Appointments, and ask (nicely) if they can slot you in for a cancellation.
Appointments often do things their own way, and will often go forward 3 months instead of 3 weeks.

In the past, I have even had two letters in the same post - one was a cancellation and a new appointment.
The second cancelled the new appointment and gave me another.
I e-mailed my MS Nurse who sorted it all out.

Note, if you e-mail rather than phone, you create the start of an audit trail in the event of a formal complaint. They don’t like that.

Geoff

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Sometimes there is a follow up letter after my annual MRI (on Tysabri) and sometimes there isn’t - I tend to assume that no news is good news! But if you are anxious about it, you need more than that. If an appointment is not possible, why not ask for a letter? Even if it’s one line saying ‘pleased to report no significant change’, that might give you what you need.

Alison

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Quick update. Managed to book a private appointment with my neurologist.

Fingers crossed