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Update

Well saw neuro reg today for follow up from clear mri. He told me it was normal so that’s good nothing going on. Told him about my leg and fatigue so he checked my legs I could no way raise my bad one as much and found push/pull harder with that leg but he said exam normal. Said word problems likely migraine . Well they have gone because of meds and I was told any associated migraine symptoms would go to if they didn’t not migraine. He then decided word problems are due to migraine meds despite me saying had them in episodes before this and we need to stoo my miracle migraine drugs for a different one. I asked what about my leg that feels like it is packed in ice/in tight band and got told the new drugs will sort my restless leg problem (I also get crawling sensation). He said if I really wanted I could have further tests I could but he felt that they were pointless as will no doubt come back negative although if I desperately wanted to reassure myself and go down that route I could and that although he thought it might be ms last time he’s now changed his mind and thinks just change my meds. Oh and he’ll recommend I see a psychologist/counsellor to discuss any issues I have although that’s standard, I said that’s fine I’m happy with life except what’s going on with my body but willing to go. He has said he’ll make sure I’m reviewed soon to see how meds go and then said that this soon will be 6mths. So not sure what to do about further testing as I really felt like if I’d said I wanted it that I looked like a hypochondriac and when my mum asked if I could have a think he basically said no as he’s leaving this week. The further tests would be lumbar puncture, vep and nerve testing. Confused now Axx

Oh forgot to add he asked about my bowels so said a bit sluggish past few months probably go 2 maybe 3times a week so he reckons that is the cause of my urinary symptoms (that pre date this) of urge incontinence and I assume incomplete bladder emptying cos I think it is sometimes and will stand up and find my legs soaking. Axx

If I were you, I’d have the tests if my gut instinct felt that was right, nevermind what others might think. Good luck with the migraine meds xx

Hi arwen! Have the tests if you are still not right xx

I would push for the tests too. You have been suffering for a while now and need to know what is wrong.

Thanks. I really felt put on the spot and as though if I said I wanted them that I was clearly over reacting as he just kept saying how the mri was clear anything else most likely would be too. Ax

I’m not saying that this is what you have but if you read about CIS this can be diagnosed with a clear MRI but from other tests and a physical examination, so you have every right to ask for the further tests, especially if they mentioned MS to you previously…

Hello Arwen It’s really good that your scans have come back clear but you still have symptoms that need investigating. Would you like to have the further tests offered Arwen? Stop thinking about what other people may be thinking…who cares…do what makes you happy. Ask yourself another question. Do you need to see a counsellor? If yes then great, counselling can be very helpfully. If you don’t need it though then say so. These test are not just about showing if you have ms but finding out what’s causing these problems your having. Take care, Noreen xxx

I would also have the tests otherwise you will be left wondering what could be causing these symptoms. Hard to believe migraines can be responsible for everything. Good Luck xx

Ring the neuros.secretary… ask for the further testing!! Better to be seen to be making a fuss than keep feeling like this with no sort of explanation as to why. who cares what they think anyway?! Your health and happiness is way more important. You have your kids to think of xx ha ha that sounds so bossy!! But don’t stand for being fobbed off and made to feel silly xx

Arwen,

you have had some symptoms that, unsurprisingly, have left some big question marks for you - I agree, get the tests done!

Good luck and keep us posted

Sonia x

To be honest yes I would have liked further tests or some sort of answers rather than being taken off migraine meds that I am happy on and have changed my life. I can’t believe I did say yes to counselling think I just wanted to show willing but will be boring sessions as I was very happy in my life until I developed these symptoms. Not necessarily even want to push for ms tests only but some sort of explanation. I am definitely going to get copy of mri report as I haven’t seen it just told nothing on it but one I had 4yrs ago showed some narrowing on c/spine so has that gone??? I asked if I could think about tests and got told not really as it’s his last day (he is reg not consultant) Axx

Ring the neuro department and let them know you want the further test you were offered. If you really don’t want counselling then say so. You can also ask for a second opinion if you wish to…he’s not the only neuro. Take back control Arwen. Noreen xxx

Good luck Arwen with what ever you decide chuck.

x

I agree with Noreen, Arwen!! Girl power!! Ha ha xx

Ha ha ha love you lot cheered me up no end. Secretary on half day so phoned for copy of mri scan and I need to fill in form to get it but that’s fine. Axz

I’ve sent mine off… with my £10 check as it’s a subject access request under the DPA… which, in short, means i have to pay to get my own information!! They said it costs an extra £5 to get copy of scan on disc and 25p per photocopied sheet! Best get saving up the coppers hadn’t we, Arwen? Bet they’ve got reams and reams on us!! Ha ha xx

Yep that’s what I got told it would be too so not sure how long it takes to get the information. Last mri I had I just got given a copy but that was 4yrs ago. I expect a paper shortage to follow lol A

Hi Arwen

So sorry you didn’t get any definitive answers.

I’m with everyone else on here and definitely think you should push for the other tests, if only for your own peace of mind.

Good luck xx

Hi Arwen

pushing for answers is difficult. With my first neuro I was offered further tests when my MRI showed non-specific stuff and told me to go away and think. I then came back and wanted the tests and he said they weren’t needed and brushed everything off as well as threatening that I woul be cathetirised. By the time I was re-referred to a general neuro then MS specilaist I was better and opted out of the tests with the view I get reviewed in 6 months as I was better. You know the rest.

You have to do whats right for you Arwen. If going for the tests gives you piece of mind then do it.

Reemz

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