Hi all Following on from my other post about only being referred for a head scan, I had it today. Incidentally… OMG why did no one mention how awful mri’s are?! Haha! I thought I was going to die from hyperventilating, even thinking about it now makes me feel sweaty and panicked! It was a mobile scanner, she did say they have another slightly bigger scanner if I ever need to go back for more (I think she sensed I did not enjoy the experience although I tried to put on my big girl pants and be brave!). You’re all so nonchalant about it I assumed it would be fine! But anyway, results day is 2wks but I am wondering how to kinda ‘secure’ a spinal mri to put my mind at ease (not that I ever want an mri again tbh!). I’m so so worried she will be distracted by the fact that it was cognitive issues that got me referred to the neurologist in the first place that she will be reassured by the normal brain mri and not send me for spinal one, when in truth the vast majority of my symptoms have actually been physical ones like paraesthesia and bowel/bladder issues and stuff, but I just hadn’t put two and two together to realise they were actually all neurological rather than just the disparate issues I thought they were. I’m worried she’ll shrug it off and be like 'well obviously these aren’t the real issue since that isn’t why you referred, you’re just being a hypochondriac worrying about all this stuff now when this isn’t even why you went to the Gp`, I don’t want to mention M.S even though it’s kinda the obvious thing to rule out from a quick Google of my symptoms (it’s how I ended up here, after I had googled some stuff adverts for M.S support kept coming up on my fb timeline! So it made me Google the symptoms which is when I realised I had had a significant number of them… Which I do realise means nothing as they mostly fit other conditions too). But I know that going in there basically armed with your own diagnosis and plan for investigations and treatment is the quickest way to put a practitioner’s back up! So I don’t really want to say outright I’m worried about M.S, but I do want to make sure she does the spinal mri to rule it out because my (admittedly overactive) imagination is telling me ‘what if the cognitive stuff was just stress, that’s the only one of your symptoms that would come under brain lesion symptoms, everything else would come under spinal lesions… So what if the cognitive stuff is just stress as just an adjunct to something physical, then surely nothing will show on the brain mri and she will assume since my brain symptoms aren’t caused by M.S that I don’t have it at all, but what if I do have lesions but they are all spinal since the physical stuff isn’t so easily explained away and surely must have some actual cause?!’ Sorry, I do realise that is rambly and repetitive but that’s literally the way my thoughts see running atm! So that’s where my head is at, overdramtic I know. I just want to have an idea of how to broach it if she seems on the verge of sending me away with no further investigations, I know realistically we should be able to trust the neurologists to do their jobs but looking at how long some people here have to fight for a diagnosis I am not going to rely on it, I want a backup plan of how to politely raise it without antagonising her by sounding like I’m self diagnosing and telling her how to do her job!
Dam and blast it, I’ve just written a whole long reply to you then lost it!! Here’s the highlights.
You aren’t the only person to hate MRIs, many (even most) people hate the noise, claustrophobia, vibration, noise (again), the cage around your head. People who don’t mind them are in the minority. (I’m quite happy in them, I have a tendency to fall asleep!)
Rest assured that if you have a neurological condition, your neurologist will find it, you may have to have other tests, but be clear with the neuro about your other symptoms when you see him/her next time. You may have to submit to another MRI, but you could ask if there’s any possibility of an ‘open’ MRI, they do exist, but it could take longer to get a slot. Or you could request a sedative.
With luck you won’t need another MRI, but if your brain MRI is clear and the neurologist says it’s not MS (or another diagnosis), ask how they can be sure. Tell him/her about your other symptoms, ask for a further physical examination and request further tests, but trust in the knowledge and experience of your neurologist.
Ugh isn’t that the worst, losing a long reply! Thanks. Yes I need to man up and make sure I’m not fobbed off because I know if they say ‘all looks OK, it’s probably stress’ or something it will take ages to get back into the system!
You are of course pre-judging the results of your MRI scan. Stop worrying that it will be clear and you’ll then have a battle to fight to be taken seriously.
Write down all the symptoms you’ve experienced, put some dates on them, roughly when a symptom began and how long it lasted (a kind of timeline). Once you’ve done this, you’ll be prepared for the appointment. So try to relax about it. Just remember to take your list with you to the appointment! And don’t be shy about getting your list out if it’s needed.
Ha, this is true! I think it’s just because most of the symptoms I’ve had seem more associated with spinal lesions do I feel like ‘meh, no way will she see anything on the brain mri!’, you’re right, I should probably at least consider the possibility of them having noted something. Definitely not embarrassed to take a list :D, you’re right, I need to sit down and have a think about when things started, it’s sometimes hard to pinpoint with the milder things isn’t it.