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MRI booked. Now I'm getting scared.

(12 Posts)
iwasagirlinavillage Mon 17-Jul-17 20:36:48

Since around March this year I've had a range of symptoms:

- left sided weakness/numbness/heaviness
- shooting pains on the left side
- foggyness/lightheadedness
- lack of concentration
- double vision
- fatigue

I think there are others but I can't remember then right now. Anyway, I had my first appointment with a neurologist last Monday and she said she doesn't think it's just caused by stress (this year has been awful for me), my reflexes are asymmetric and she mentioned MS, Lupus and Rheumatoid Arthritis. She's referred me for a head and neck MRI and took a lot of bloods. She said the wait for the MRI would be 2-4 months but I spoke to them today and they have given me an appointment for 2 weeks time, 3 weeks from referral.

So now I'm concerned why there seeing me so quickly. Hopefully it's just that I got a cancellation. They're doing the MRI with contrast and I'm breastfeeding so I've been told I can't breastfeed for 24 hours afterwards. But I hadn't really considered what the MRI would involve or what it could show, it seemed like such a long way off I hadn't attempted to get my head around it yet and I didn't ask the right questions last week. So what will happen? They said they've booked me a 50 minute slot. I know they will inject me with the dye, will I feel the dye going in? What could the MRI show? I know it could show lesions which could indicate MS, but what else could show up? And what happens afterwards? My follow up with the neurologist is 3 weeks after, will I get the results then? Or if there's anything obvious will I be told sooner?

Lastly, could this be anything else, non-neurological? With the asymmetric reflexes I'm not sure. Everything else could be "in my head" (mind, rather than brain), but what could cause asymmetric reflexes?

Sorry for the ridiculous amount of questions. The reality of this only just seems to have hit me.

TIA.

OddBoots Mon 17-Jul-17 23:06:30

The speed of the MRI is likely to be that someone has cancelled so don't worry about that.

It is good that they are doing an MRI, that gives the best details so should have the best chance of giving you an answer.

I am no expert in what it could show but if they have only just taken bloods I know there are some simple answers like vitamin deficiencies that could be factors and they are way to fix.

I know it is hard but try not to worry, the not knowing bit can be the toughest part and that bit may be over sooner than you expected.

Crumbelina Tue 18-Jul-17 07:56:06

I can't give much advice so will give this a bump for you. I had an MRI last year and was advised to stop breastfeeding. Unfortunately I had a bottle refusing baby who wouldn't accept expressed milk or formula and so we endured a horrible few hours until I called the breastfeeding helpline. An expert on the topic (has a PhD, published numerous papers) called me back to reassure me that it was absolutely fine to breastfeed (more info here: kellymom.com/bf/can-i-breastfeed/illness-surgery/radioisotopes/, which was a huge relief.

My MRI was fine. They injected dye halfway through, which I didn't really feel so it was no bother. The only discomfort came from being in the machine for a while (although you don't go right in - more down to your hips as opposed to ankles). Some of the noises can be a bit loud but they give you headphones and you can listen to a radio station of your choice.

My own story is that I suffered a bout of Optic Neuritis and the MRI revealed some small scattered lesions. I'm at a higher risk of developing MS but haven't had any other symptoms since late 2014. As soon as I made the link between ON and MS I got myself into such a worried state that I seemed to bring on symptoms such as headaches, dizziness, shooting pains in my head and face. When my consultant reassured me that MS wasn't a certainty and I didn't currently have it (had lots of other tests which all came back clear) the symptoms went in a few days and haven't returned. All in all it was a very stressful time but I've put it to the back of my mind now.

Good luck with it all!

iwasagirlinavillage Wed 19-Jul-17 08:43:40

Thank you both for the responses.

I just want answers now. It's good that I don't have to wait too long.

Do you remember how long you waited for your results Crumbelina?

Crumbelina Wed 19-Jul-17 09:37:17

For the initial call (when lesions were first discovered) it was pretty quick - possibly a few days after the MRI and a further appointment scheduled for a couple of weeks after that. I was initially seen by an Opthalmologist because of the Optic Neuritis but after the MRI results came back I was referred to a Neurologist. The second time I had an MRI (just as a monitoring one) the results had hardly changed and so I waited a few weeks until I saw my consultant.

Good luck with everything. There might be many other reasons as to why you have those symptoms and even if it did turn out to be MS each case is very different and it could be very mild. I was the same as you though - the waiting was the worst part. I definitely agree with the previous posted - it's almost certain to be a cancellation.

And don't Google too much! I read far too much on the internet about Optic Neuritis, lesions and MS and worried myself far too much!

regrouted Wed 19-Jul-17 10:40:01

I can echo what the previous posters have said to reassure you further about the cancellation. You also have symptoms that are interfering with your day to day, so try and think about these investigative tests as working out how to treat your symptoms rather than find out something sinister.

Practical advice for having a MRI is to make sure you are comfy as possible. The bed moves along little grooves, which elbows can sometimes get caught in so make sure you are all tucked away from that. You'll be given earplugs, a buzzer to hold, a blanket over you (if it's cold in the room) and then foam pieces that go either side of your head to minimise movement. The bed then moves backwards and forwards to different depths of the MRI and you'll hear different patterns of loud intermittent banging from the magnet. For some of the images, particularly of your head, you will go right inside so you may not be able to see any light by your feet which some people feel distressed about - just focus on your breathing and the importance of them being able to get a clear image. You'll soon be moved to a different part and then it'll soon be over. Most patients feel that it wasn't as bad as expected and really is fear of the unknown in a very alien environment. I have had a MRI myself and wouldn't blink an eye if I needed another. I got my results about two working days afterwards, but it really depends on who needs to review the images.

Best of luck!

iwasagirlinavillage Wed 19-Jul-17 11:36:50

Thank you. I think the thing about the appointment is that they offered me two different times on the same day, which made me think it's not a cancellation. Maybe they've just opened up some new appointments or something.

So it seems to be common practice to get results as soon as they're available, rather than just waiting for the next appointment? In the scheme of things, the appointment being three weeks later isn't that long, but it will feel like an eternity once I know that someone else has reviewed the images and knows the findings if I then have to wait until the appointment.

In a way I'm hoping the MRI finds something, but something minor which is easily treated as then treatment can start and it can all be resolved. But I don't know what MRIs can show so I don't know what "simple" conditions it could possibly be, if that makes sense. I'm also a bit sad that any treatment might force me to stop breastfeeding sooner than I would otherwise choose to. But if nothing is found then I'm no further along and have to continue on with these symptoms until a cause is found.

regrouted Wed 19-Jul-17 15:14:21

It really depends on why the MRI has been ordered and who by in terms of how the results are relayed. You could be seen by a physio for back pain who then orders an MRI, finds nothing, calls you as soon as possible and discharges you from musculoskeletal back to your GP/other HCP for them to manage you, rather than wait to be seen in a clinic to be told that your problem doesn't sit within their remit.

MRIs provide diagnostic imaging for lots of different things - brain ailments, musculoskeletal problems, spinal injury, vascular problems, pelvic problems, soft tissue issues, prostate problems (obviously not indicated for you) and so on. As you are being seen by a neurologist their remit is physical/electrical abnormalities not just within the brain but in the spinal cord and other nerves, so they will be looking to see if there is any issue there. Disc problems for instance can cause asymmetrical reflexes but as other posters have said, although difficult not to, Dr Google really can lead you down a rabbit hole of worry and distress.

Many problems/conditions appear with similar symptoms and even though symptoms may appear at the same time they are not necessarily linked. Diagnostics is about ruling out what it's not and narrowing down what it could be so it's good that you are having an MRI soon in order to get closer to reducing or getting rid of your symptoms.

woosey35 Fri 04-Aug-17 11:59:53

Hi

Just read this thread and wondered if you'd had your MRI and how you got on??

iwasagirlinavillage Sat 05-Aug-17 17:21:20

The MRI was fine thank you. Although since then my milk supply has severely reduced, although weirdly the day immediately after it was fine - I was expressing - but since then I seem to have hardly any milk. @Crumbelina, when you had yours and had contrast did you find it had any affect on your supply? I can't find anything online to suggest that it should but I can't think of any other reason why it would suddenly decrease so drastically.

Crumbelina Sat 05-Aug-17 20:30:45

So glad the MRI was ok! No, I'm pretty sure the dye had no effect on my milk. It could be a temporary blip/coincidence. Hopefully it'll be back very soon. Could you be dehydrated at all?

Mascarponeandwine Sun 06-Aug-17 15:26:46

When do you get the results iwasagirlinavillage? I am struggling with some similar symptoms and have a gp appointment next week. How are you feeling now?

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