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Advice please

Hi guys, I’ve not been on here for a while. Been waiting for results of MRI hollowing Neuro appointment in September. Finally after 6 weeks of waiting I received letter from neurologist today and my MRI of head and lower spine was ‘normal’ and I have been discharged. No follow up offered. Really dont know where to go from here. Last year when I had to see a gastroenterologist and was explaining medical history, she asked me which Neuro I had seen, when I told her his name her words were ‘you could always ask for a second opinion’! At the time I thought that’s a strange comment to make about a fellow consultant. He put me on Pregabalin in September which despite weight gain, has really helped some symptoms although not all. I need to know what is causing these symptoms and chronic tiredness. Don’t want to spend rest of my life on meds if there’s ‘nothing wrong’. Any advice about getting a second opinion would be gratefully received. Jane x

I really do feel for you, I’m in the same vote and I’m on my third neurologist who is now doing something, I’m due to have emg test in December, as my scans have come back clear but I still have flare ups when I can’t walk, there is something going on and métis don’t show nerve damage. Put if you know something is wrong, if no one is listening keep pushing cos there are good doctors out there, I’ve been poorly 10 months now and only just getting somewhere. I’ve had lots of blood tests, 3 Mris and cos the MRI came back clear, I got told it was in my head by one guy, in my head, does he think I like not being able to walk, to have to rely on kids to help me put my shoes on. I would always swap the problems I have now if only it would make me better, I’m willing to try anything. Good luck hugs xxx

Hi Jane

Sorry to hear you’re having a rough time :frowning:

Perhaps go back to your GP and tell them that the problem does not appear to be neurological (according to the neurologist you’ve seen) but explain that the symptoms are still there and you really would like the investigations to continue.

Perhaps even mention the Gastro’s comment of maybe seeking an alternative opinion. Ask your GP what they suggest as to where you should go from here.

It’s your body, and you know better than anyone when there is something that’s not right

PG xx

Thanks for your kind words. I actually work in a GP surgery and asked our secretary today the best way to ask for a second opinion. She advised me to write to the consultant and ask for copies of my MRI and also explain how unhappy I am about being discharged while still symptomatic and with no explanation of where to go next. She kindly wrote a fantastic letter for me and at the end asked he could refer me onto another neurologist for a second opinion. Don’t know whether anything will come of it but watch this space. Jane xxx

Your colleague sounds brilliant! How very helpful.

I have everything crossed for you that the letter yields some good results.

PG xx

Hi Jane Definitely the right thing to do to ask for a second opinion. I did this when my original neuro said not to take LDN with rebif. It was scary basically saying I didn’t like or believe what my first neuro was saying and wanted to see someone else. So I saw second neuro who said LDN and rebif ok. Still having reviews with original neuro and relationship with him is fine. Hope you manage to get your second opinion Hugs Min xx

Hi there Cassies mum ,you poor thing, it must be difficult to be symptomatic and for them not to find a cause for it?I hope that they find out what is wrong and can help you. i have rrms but i am also having gasterenterological problems. they have put me on ompeprazole and esompeprazole, had a camera in tummy and an ultrasound on abdomen. i feel that the digestion problems i have are linked to the ms, as have had acid reflux and food repeating on me for years and a horrid taste in my mouth.Funnily enough am having symptoms in my eyes and abdomen and although my mri scan in sept has showed lesions on chord and cervical spine my mri has got much better compared to last years mri so the nurse isn’t worried but am having symptoms in eyes and abdomen.I hope you’r efeeling a bit better and beginning to get some answers.do you find is your experience similiar to mine at all?Take care.