From eye test to oncology and MRI?!?!

[Bonkerz]

Feeling confused. Avoiding doctor google. Don't know what to think!

Dd age 12 had her eyes tested at local opticians in half term. She left not needing glasses. Optician rang me 3 days later and said she had failed the peripheral vision test 4 times and as a precaution the optometrist wanted to refer to local small hospital for further eye tests.
A week later I had a call from county hospital (not small local) to attend an appointment yesterday (4 days notice).
Took dd yesterday for what we thought was eye tests but after an hour of dd being examined and being asked questions the doctor said she was from oncology and that she needed to speak to her consultant.
After 2 hours we were told dd needed an MRI scan and the word cancer was dropped a couple of times.
Even more scary doctor gave us a list of symptoms to watch for (tbh dd has had headaches and dizziness for months now but I put it down to weather and puberty!) and told if she got worse to go straight to A&E with her case open on oncology.
Got home and got call to take her tomorrow for MRI.

I'm really confused. Don't know how we got here. Are they being over cautious? Could the optician have seen something worrying?
TIA

[StormcloakNord]

@Bonkerz how are you and your daughter doing?

[HoppingPavlova]

Out of interest why will she need to be sedated for the MRA/MRV? Mine has had these along with countless MRI’s and was not sedated and would have had the first MRA around 10yo. They use a contrast for them but that’s just an injection. Just curious? Mine is a frequent flyer to the MRI machine (same actual machine does MRI/MRA/MRV).

If it helps they get used to it all very quickly. From 12yo I was dropping them off at the door and they would go check themselves in and by the time I had found parking and made my way in they would be in the machine (we always pre-did paperwork via email so it was already signed). I would go get a cuppa and come back to meet them when they had finished. From 11yo they didn’t need DH or I in the room while they were in the machine.

Really hoping things go well for your DD and you get some answers soon.

[fieryginger]

Hopping if she's having regular panic attacks, it's good for her that she'll be sedated. They'll need a good test and why put the girl through the mill if she can have some medicine to chill her out?

Op - I'm sure they can help her with her panic attacks? Some emergency diazepam from the gp? A psychiatrist referral? She shouldn't be left to just deal with them, especially if she has other health issues.

Good luck 💐

[Bonkerz]

Hi everyone. Thanks for thinking of us. We are currently away on holiday in uk.
Dd been ok. She had pain Thursday last week which caused another panic attack but we got it under control quite quickly. GP also prescribed codeine for her which has helped keep her pain levels down. She's been complaining about numbness in her arms and legs again but no tremors for a few days although she says her muscles feel like she's been weight lifting.
We were busy yesterday and we went for a walk this morning and she's now in bed resting as she's exhausted.
Just hope the appointment is waiting for us when we get home Monday!
As for being sedated. She had head mri and couldn't stay still so to get better pictures they need to sedate her unfortunately.

[MakeTeaNotWar]

@Bonkerz how did your appointment go? I hope you've had some good news

[Bonkerz]

Ended up back at GP Monday. She's still suffering with the headaches daily. Sleeping is an issue. She's either too knackered to move or can't sleep at all. Appointment 17/8 with eye clinic again. Apparently they need to rule out Atypical Migraines.

[PeachyKeenJellymonster]

How are things

[Viewofhedges]

This might seem weird but I had a history of awful headaches as a young teen and I've had problems with them throughout my life and had numbness, tingling etc etc- long story cut short 3 years of hospital system (MRI, tricyclic painkillers etc) came up with nothing. Chiropractic treatment (neck) has however really worked for me. You might think it's a bit woo but as it doesn't involve tablets etc might this be worth a try? Only posting as I wish I'd tried it sooner. Obviously serious things need ruling out, but my experience is that nhs finds headaches very difficult to sort if there is no obvious cause, and the headaches plus tingling plus numbness sounds very neck/ shoulders/ muscular/ nerve to me (if it's all out of whack they press on each other causing these scary symptoms).

[Bonkerz]

Its been a horrid summer. Dd been suffering with severe headaches and tremors every other day. We have a hospital appointment Monday now but after her second attack in 4 days her school have said she can't come in as she isn't safe. She collapsed today on stairs due to leg tremors. GP was useless and said he doesn't think we can get answers anytime soon and that unless I can video dd having an attack then it's not very helpful. I'm exhausted.

[SmartestGiant]

Sorry to hear you're having such a rotten time. Hopefully you will get some answers on Monday. It must be very scary for your DD as well as you.

[OddBoots]

Oh what a horrible time you have had, from things moving lightening fast to this. I hope you are able to get answers soon, this anxiety hanging over will be making things worse.

[Haworthia]

I posted on this thread in the early days, under a different username, and I’m really sorry your DD is still suffering. When is the Neurology appointment? I’m amazed you haven’t had one already.

[ShakespearesSisters]

I'm so sorry to hear you are all going the this. Sending hugs x

[MagnaDoodle]

and for you OP

[RockinHippy]

Im glad they've ruled out Cancer, I haven't RTFT but spotted you are B12 deficient.

Please insist they test her fully, that means all of the relevant tests, not just serum B12. Then ask for a therapeutic trial if B12 injections.


It's hereditary as I'm sure you know & her symptoms fit that pretty well. I've had what sounds like the same visual problems show in an eye test & MS is on the list of frequent diagnosis. My mums MS actually turned out to B12 deficiency

Kids need more B12 than adults & it's important that it's caught early, or they might not fully heal. My own DD is looking at an ASD diagnosis as she wasn't treat quick enough.

If you are not a member already I suggest you join the Facebook group I the photo they were a godsend to me

[RockinHippy]

I was diagnosed with chronic migraines as I had them most days, also trigeminal neuralgia, cluster headaches & chronic persistent headache.

It was ALL B12 deficiency related

[RockinHippy]

This symptom check list might be helpful..

[Bonkerz]

Thankyou. I did ask if she should have blood tests at last appointment but hospital said neurology will do it. We did get an appointment for August but they cancelled it last minute then re arranged to 10/9.
I will insist on tests though based on my PA.

[Starlighter]

I can’t believe you’re still waiting for answers! That’s shocking! Why haven’t they done bloods at least?! That’s such a simple, easy and effective test!

She’s missing school now too. I’d be back to the GP demanding answers.

I can’t believe they’ve just left your dd to suffer like this. .

Flowers for you both

[Bonkerz]

I just don't know what to do.
I've been told I just have to film her when she's having an attack and make sure she's safe. It's so hard to do! GP even told me off for the ambulance that 111 called on Thursday! I wanted an appointment at the walk in centre but they heard her screaming in pain and sent an ambulance!

[RockinHippy]

111are well known to be trigger happy with an ambulance,there's no room in the questionnaire for common sense. Your doctor shouldn't be telling you off for how crap the service is & after the session I had with them this weekend, boy are they crap


Your GP doesn't sound great either, is there another you can see ??

GP can arrange blood tests. If her serum B12 shoes as low, GP can start treatment there & then. Though remember kids need more B12 than adults, my then 12 yo was in a wheelchair with serum B12 of 412, the loading dose had her able to walk again in under 2 weeks, yet as far as they were concerned her B12 was fine 😏

Do join the group though, they can help with info to give to your doctors

If you are close to London, the Viapath Clinic at Guys & St Thomas's do cheaper private vitamin test. They process NHS bloods too, do your GP can't refuse to accept the results. A few years ago it was £19 for a more accurate Active B12 Test, you can get homocysteine etc done there too. They were a great help to us.

[Bonkerz]

I do regular active b12 tests by post so I could do one for DD. I also self inject b12 but don't want to do anything just yet. Will see what happens Monday though.

[RockinHippy]

That's fantastic, are you in the U.K.? If so be careful with SI for her & who you tell, believe it or not, if we treat our own kids, when doctors won't act fast enough, it's legally considered to be child abuse 😏

[Bonkerz]

Yes I'm uk. She already takes multi vit tablets with extra b12 but I don't know if she absorbs. I don't hence the SI.

[RockinHippy]

If she's had supplements containing B12 then unfortunately her blood results are likely to be skewed, which, unless you have a very B12 aware doctor, could hamper diagnosis I'm afraid. Guidelines say to treat on symptoms though, so they are on your side, but unfortunately it can make it more of a fight. It's 4 months plus to clear your system. Her symptoms strongly suggest that she isn't absorbing it

I'm guessing it already know Tracey Wittys B12 Website?? All the info you need is on there& in the files on the group I mentioned above.