Diagnostic pathway after 1st episode (adult)

[whittr]

Hi. My friend had her 1st fit 2 months ago and is under investigation. However the pathway has been a little unclear so far. Although the initial tests etc have been undertaken it's all been a little disjointed without clarity as to the next steps each time. Initial investigations were undertaken on the day including ecg etc. A consultation followed 2 weeks later and a full detailed summary of the fit had been taken. I understand the initial neurological signs look ok. MRI was 6 weeks after the fit (initially advised would be within 2 weeks of the fit) and there's an outpatient appt in June, which purpose we were initially unclear of. The pathway for initial results of the MRI is unclear as June seems a long time to wait and naturally she would like to move on. Whilst she has rang to ask for the results (2 weeks post mri) she has been advised this will be discussed in June. They looked at her notes but it appears the results are not yet reported. Sorry if sounds moany (hasten to add care received has been excellent) but with other health care pathways the timelines, processes seem much tighter and the uncertainty is adding to anxiety. We'd be grateful for any advice on whether this experience is generally the norm or if she can push in the nicest way for results sooner would be great. Thanks

[RR25]

That sounds about right. Any tests my neuro asks for are done in between times of when I see him. I would usually get the results of my MRI's or EEG's at my next review. Unless there is anything abnormal in the results requiring them to contact you sooner you will not get the results until June. I know your friend hasn’t been diagnosed with epilepsy yet, but use could get in touch with an epilepsy nurse at your hospital and ask her advice. I hope this helps.

[whittr in reply to RR25]

Many thanks. That's really helpful

[sporan]

Hi,

RR25's reply is pretty acurate and follows my experiences. After the initial panics and uncertainty's caused by these delays now 3 years in I've realised that if there is anything abnormal you'll hear sooner rather than later and scans are done between followups so they can be properly reported and discussed at your next appointment.

Uncertainty is the hardest part to deal with of any health problem.

Try not to worry too much as has been said the 'no news is good news' is often the best view to take.

Hope all goes well

Sporan

[Hidden]

Hi, having had epilepsy for 41 years now, I agree with both comments above. As the saying goes, 'No news is good news'. When undergoing tests, results are only usually shared with me on my next appointment, sometimes 4 weeks' later. The Neurologist will make contact should there be any urgency in this regard.

Try not to worry and take each day as it comes.

Hoping all goes well.

Regards,

Les