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

[steppemum]

sorry, OP, missed the date and your update.
Hope all is well

[Calledyoulastnightfromglasgow]

Hi OP been thinking about you and your DD andhoping all is ok

[Whirliegigspiders]

Good luck

[mammmamia]

Hope all is ok OP

[Bonkerz]

Thanks for the thoughts. It's gets more confusing. Was rang 3 days after MRI and told with regards to brain it was clear. Had eye clinic today who have said MRI showed swelling across sinus area but eyes are clear.
They have now referred on to neurology. Theory is that infection has caused inflammation which is pressing on nerves causing vision loss OR early onset MS. Now we wait for another department and more tests

[Bonkerz]

Hate dr google. She fits so many symptoms of MS it's scary.

[Hawkmoth]

How long do you have to wait OP? That sounds so frightening,

[Bonkerz]

No idea. The eye doctor just said he was making an urgent referral to neurology and we should expect a few more appointments before getting answers.
The MRI showed inflammation and she's been getting numbness and pins and needles for last few weeks plus dizziness

[ExBbqQueen]

[lolalotta]

Good luck OP, sounds frightening.

[mammmamia]

Thanks for the update OP. Sounds scary. Keep posting if you want to chat.

[Cornishclio]

Hopefully it is an infection which will clear up soon but I just wanted to offer a few words of reassurance re MS. My brother was diagnosed with MS a few years ago after experiencing vision disturbances. An MRI scan showed lesions and MS was diagnosed. He has been on a new type of drug since and apart from one relapse he is able to lead a perfectly normal life. They think he may have had it since a child and he is now 47, he works full time, travels abroad on holiday and plays a lot of golf and has no mobility issues. We were devastated when he was first diagnosed but there are many people with MS who lead normal lives so if your daughter has it there is plenty of support out there and the new drugs can really help.

Saying that of course understandably you would rather this is just a one off infection. Fingers crossed for you.

[mynameisnotmichaelcaine]

Sounds really stressful. Great news that she doesn't have cancer, I really hope it's an easily shifted infection. Very easy to say when it's not my child, but worried parents can convince themselves that symptoms can't be anything else.

[Bonkerz]

Thanks all. It's a scary time and trying to keep my anxiety from her is difficult. I'm hugely relieved nothing sinister was on the scan with regards the brain Ofcourse I'm just so scared for her future. I know we will deal with it but I just need answers now.
Parental guilt is wonderful as I've been quite hard on her with regards the headaches and numbness etc and almost ignored her when she's said she's been poorly. Now obviously I'm panicking every time she moans which she has also picked up on.

[Hawkmoth]

Just checking, has she had her folate levels checked? My DD is having similar symptoms, though not as severe and it's folate deficiency.

[Bonkerz]

This is the thing. I myself have an auto immune disease caused by B12 deficiency. I believe all auto immune diseases are closely related and possibly hereditary but unfortunately my parents both died over 10 years ago so I can't access their medical records to see if it's on my side.
I asked dr yesterday if I should get her bloods done at GP but he said neurology will sort all that.

[Bonkerz]

So we ended up down a&e today. School phoned me at 9:30 to say DD had started shaking and her left arm had a tremor. She then had a panic attack which sent her heart rate up. School rang an ambulance but it was going to be a while so I drove her instead.
After 4 hours, an ECG and monitoring the doctor just said he thought it was best to wait for neurology as he couldn't diagnose anything. He said there is nothing they can do if it happens again and we have to talk her through it.

[Etymology23]

Crikey OP, sounds like a very unpleasant roller-coaster ride you’re on at the moment. Wishing you all the best; it must be frustrating to be waiting like this.

[MalloryLaurel]

Panic attacks can cause pins and needles. I get them in my hands and arms. Also trembling in my hands. Don't feel guilty, you sound really caring. Also it's really stressful when you don't have the answers.

[sillyoldowl]

Oh op poor you and your daughter so stressful for you

[HappyHedgehog247]

I’m sorry you are going through this. Can you call neurology and let them know to see if you can get in earlier or can you do a private assessment possibly?

[HappyHedgehog247]

By you, I meant you and DD. I hope she feels better soon.

[hendricksy]

Blimey that sounds scary , I hope you get some answers soon . I have been in a position of waiting for test results for my son and the waiting is hideous . Good luck .

[Jebewill]

Hi, just wanted to say last August my 13 year old DD stared having dizzy spells, headaches, uncontrollable twitching of the arms and legs, numbness. Then started having seizures. Most days during the week we end up in getting phone calls off the school to say they’ve rung 999. It’s been an extremely difficult 12 months, I’ve had to give up my job. Op I understand how your feeling with the worry of it all. I am putting it down to hormones as they school sees this every year with a cluster of girls around age 12/13 and it just goes away eventually. I am praying it will. Thinking of you.

[Bonkerz]

Thanks for the posts and the wishes. She had a bad weekend with headaches and went to school Monday but developed double vision and arm tremors again which caused her to panic. Ambulance was called. She hasn't left my side since.
Rang neurology and chased everything Monday. We got a letter this morning saying she had been referred for an MRV/MRA to check her nerves and arteries so she will have to be sedated. It's a waiting game now. Doc has prescribed codeine for the pain but they don't seem to be helping.