Out of my mind with worry [Please read the OP's updates before responding - Title edited by MNHQ]

YourRubyMaker · 2025-02-22T17:59:48+00:00

Someone please just give me some hope I’m so stressed I can’t function , my 10 year old since sept has had a limp in one leg then it became a weekness in his arm and hand on the same side , doctor was useless and made me do it as two separate issues and make another appointment!!! Didn’t take me seriously and Had X-ray on hips all fine (obviously 🙄 ) I went to see another doctor who said im referring it for urgent peadeatric appointment (great so helpful ) and he wanted to refer for mri but couldn’t , appointment comes thro and it’s in fucking June !!!! And that’s a urgent referral , in the mean time it’s got worse and now he can’t run and often stumbles and falls doesn’t use the arm hardly at all , have taken him back and they’ve now booked a mri brain scan for next weekend , which happens to be on his birthday of all days 😭 he’s mental health is shit as is mine and he’s obviously worried , how long does a brain mri scan take please ? And has anyone ever experienced issues like this and it not be something life threatening, I also have a toddler so am still having to be normal and do normal stuff where as I just want to lay in bed and cry * [Message from MNHQ - please see OP's updates before responding]

indecisivewoman81 · 22/02/2025 18:09

I'm sorry to hear you are going through such a worrying time. I'm glad that your GP finally listened and you have the MRI booked.

Can you move his birthday celebrations forward a day?

I have no experience of a brain MRI but have had two MRI done in the past and they can be anything from 45 min to 2 hours. I would have thought it would be ok the shorter side since it is a child but I don't know.

I hope it goes well and that it is something easily sorted

SerenStarEtoile · 22/02/2025 18:14

Hi OP

I’m sorry this has happened, but well done you for keeping on about it until you were taken seriously and got some action.

I’m not a doctor so haven’t got any advice, except you sound like you’re coping well so keep on doing that.

I think there are various possibilities, but try not to stress because it could be something that can be dealt with fairly easily- the MRI is going to get an internal picture of the body to pinpoint what is happening. It doesn’t automatically mean that the cause is life-threatening.

It sounds like you’re keeping everything as normal as possible for your son, which is the best way to support him.

I hope someone can give you more information on what is involved in having an MRI so you can tell your son - don’t forget, millions of people have them.

A virtual handhold going out to you and positive thoughts for your boy.

Datafan55 · 22/02/2025 18:16

Don't know about brain MRIs, but my niece (12ish) had an MRI recently and she was reassured/given headphones etc and her mum was in the room with her (and the weird child enjoyed it).
The first time I had one, they gave me periscope-like googles so I could see out of the scanner (ask for them as don't always give them out, possibly some don't have), and they give you a buzzer to ring if you are panicking (but they will have to start again so try and keep going).
Just be prepared for some loud noises and to keep still!

It's really good that they can fit him in much sooner than June, so focus on that.

Original poster

YourRubyMaker · 22/02/2025 18:22

Thanks so much everyone for your words , the specialist referral is still for June this is a seperate appointment as I’ve had to take him back as it’s getting worse , so I’m presuming that if this comes back as clear I will still be waiting until June although I know the last gp I saw had wrote to the hospital again to try to speed it up , how long is the wait for the results and do they go to the gp is anyone knows please ? I’ve told him we can celebrate on the Friday eve and sat morning too but when I told him he cried and it made me feel even worse but I can’t re arrange it as we’ve been waiting for proper testing for so long

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Epictantrum · 22/02/2025 18:23

Having an mri head for a 10 year old is not easy and it is important to prepare as much as possible so he doesn’t panic and make it impossible to lie still. I suggest watching the episode of operation ouch where they show an mri, google YouTube videos of mris including the noise they make. Prepare him that he will need to wear a special helmet that is almost like a cage over his face. Ring the mri department and see if there is anything they can do to help, some departments have play specialists, a toy scanner for children to play with first, or maybe he could visit in advance and have a look around. He might have to lie still for 40 minutes, see if you can request a scanner with music or a dvd player and take his favourite film with you.

Original poster

YourRubyMaker · 22/02/2025 18:23

I was at work last weekend and somone was really kind to me totally unrelated to this and I burst into tears , it’s the waiting that’s really hard

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Original poster

YourRubyMaker · 22/02/2025 18:24

Great advice about operation ouch episode thanks

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Datafan55 · 22/02/2025 18:28

Epictantrum · 22/02/2025 18:23

Having an mri head for a 10 year old is not easy and it is important to prepare as much as possible so he doesn’t panic and make it impossible to lie still. I suggest watching the episode of operation ouch where they show an mri, google YouTube videos of mris including the noise they make. Prepare him that he will need to wear a special helmet that is almost like a cage over his face. Ring the mri department and see if there is anything they can do to help, some departments have play specialists, a toy scanner for children to play with first, or maybe he could visit in advance and have a look around. He might have to lie still for 40 minutes, see if you can request a scanner with music or a dvd player and take his favourite film with you.

I didn't know half of that myself :-)

Good point about the music. They do play music between the scans (although will be drowned out when minutes where scans being taken). I've been asked if I had a preference for music before.

(Some hospitals have Lego mri sets?)

Original poster

YourRubyMaker · 22/02/2025 18:40

Thanks for the tips , I will call them on Monday and ask but I doubt they have one with a video player as it’s a very old hospital that desperately needs rebuilding but the government have just scrapped the plans to do it , do I need to take headphones or will they supply them

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Datafan55 · 22/02/2025 18:54

YourRubyMaker · 22/02/2025 18:40

Thanks for the tips , I will call them on Monday and ask but I doubt they have one with a video player as it’s a very old hospital that desperately needs rebuilding but the government have just scrapped the plans to do it , do I need to take headphones or will they supply them

They're special ones (I think). They probably offer them to everyone. Although see PP comment re cage for a brain MRI (so earplugs might be offered?).

If you go to youtube, are quite a few videos on there. Search eg 'mri video for kids' or 'brain mri' (can see the cage thing).

I remember my feet being freezing each time I've had an MRI too (when they sit outside). He should be able to keep his socks on.

Original poster

YourRubyMaker · 22/02/2025 19:27

How long do you have to wait for results usually ?

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Unforgettablefire · 22/02/2025 19:28

Op if possible you could ring the hospital and tell them you can be available if there's any cancellations.

Good luck, I hope you get sorted quick and it's something trivial.

Somuchgoo · 22/02/2025 20:31

Being honest, it's impossible to know whether it's something serious or not. Hopefully it's not, but it's understandable that you feel frantic with worry. The good news is that if it's something very worrying, you'll find out quickly (20 minutes for us...), less urgent it a

In terms of the MRI my daughter has had about a dozen, though she's young so they've all been under general anaesthetic. She'll be doing an awake one for the first time shortly though (she's 5).

They may want to use contrast dye, and make sure they scan his spinal cord as well.

The likelihood is that it's but as bad as the places your brain goes to, you've just got to hold on and try to take cheerful and chilled for now.

Best of luck

nocoolnamesleft · 22/02/2025 21:39

Oh, for pity's sake. Weakness in arm and leg is not something to wait to June. I do wonder what information was in the referral, and whether they are actually triaged by a paediatrician: we triage all ours, and some are hoiked out of the pile and called up to be seen on the ward to make sure nothing is missed. I can only assume there was either information missing or your local hospital doesn't fully triage. I would recommend that you speak to the GP, remind them of the key features in the history, and ask them to actually speak to a paediatrician. Pretty much everywhere I've worked that would have got you seeing a paediatrician within a few days, and then depending what they find they can get an MRI, and work out where to take things from there. So many problems can be sorted by clinicians actually speaking to each other. Please beg your GP to do so.

This may all turn out to be "something and nothing", but if he genuinely has weakness in an arm and leg then that needs assessing properly.

Somuchgoo · 22/02/2025 21:41

nocoolnamesleft · 22/02/2025 21:39

Oh, for pity's sake. Weakness in arm and leg is not something to wait to June. I do wonder what information was in the referral, and whether they are actually triaged by a paediatrician: we triage all ours, and some are hoiked out of the pile and called up to be seen on the ward to make sure nothing is missed. I can only assume there was either information missing or your local hospital doesn't fully triage. I would recommend that you speak to the GP, remind them of the key features in the history, and ask them to actually speak to a paediatrician. Pretty much everywhere I've worked that would have got you seeing a paediatrician within a few days, and then depending what they find they can get an MRI, and work out where to take things from there. So many problems can be sorted by clinicians actually speaking to each other. Please beg your GP to do so.

This may all turn out to be "something and nothing", but if he genuinely has weakness in an arm and leg then that needs assessing properly.

The MRI has been brought forward to next weekend.

Greenwallpinkwall · 22/02/2025 21:51

Hi, nurse here. This really doesn’t sound good but of course you already know this. Can you pay privately for an earlier MRI?

Original poster

YourRubyMaker · 23/02/2025 07:42

Greenwallpinkwall · 22/02/2025 21:51

Hi, nurse here. This really doesn’t sound good but of course you already know this. Can you pay privately for an earlier MRI?

I do and really I don’t need reminding of it I’m not sleeping and am constantly pushing the gps etc came here for support , the mri is in 6 days I don’t have the funds to pay for one and even if I did I doubt it would be much sooner !?

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Original poster

YourRubyMaker · 23/02/2025 07:44

nocoolnamesleft · 22/02/2025 21:39

Oh, for pity's sake. Weakness in arm and leg is not something to wait to June. I do wonder what information was in the referral, and whether they are actually triaged by a paediatrician: we triage all ours, and some are hoiked out of the pile and called up to be seen on the ward to make sure nothing is missed. I can only assume there was either information missing or your local hospital doesn't fully triage. I would recommend that you speak to the GP, remind them of the key features in the history, and ask them to actually speak to a paediatrician. Pretty much everywhere I've worked that would have got you seeing a paediatrician within a few days, and then depending what they find they can get an MRI, and work out where to take things from there. So many problems can be sorted by clinicians actually speaking to each other. Please beg your GP to do so.

This may all turn out to be "something and nothing", but if he genuinely has weakness in an arm and leg then that needs assessing properly.

I have they have wrote to the hospital again , I know it was definitely booked as a urgent referral too so I have no idea why it’s been booked for June

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SupermarketMum · 23/02/2025 07:47

OP our bodies are weird things and sometimes just dont do what we expect. So despite some of the negative comments, I’d try to focus on the fact it’s possibly nothing, maybe something easily fixable etc. it will be a long week and I hope you get some reassuring news at the end of it.

CerealPosterHere · 23/02/2025 07:48

My latest mri I got the results in six days. Previous ones have been a few weeks. You’d like to think no news is good news and anything serious would be reported back very quickly. Hope it goes ok. Spend the next few days with him watching some videos on mri, finding audio tapes of the music, maybe getting him to practice lying still with his eyes closed like a game. The tube can be a bit freaky but if he can close his eyes and imagine he’s somewhere else it will be a lot better.

ChimpanzeeThatMonkeyNews · 23/02/2025 07:49

Greenwallpinkwall · 22/02/2025 21:51

Hi, nurse here. This really doesn’t sound good but of course you already know this. Can you pay privately for an earlier MRI?

Not helpful, i think.

Plopplupplip · 23/02/2025 07:51

YourRubyMaker · 23/02/2025 07:44

I have they have wrote to the hospital again , I know it was definitely booked as a urgent referral too so I have no idea why it’s been booked for June

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Call the paeds secretary today. Ask if you could please email her/leave a message. Explain that you’ve been urgently referred but appt not till June. Your son has worsening weakness on one side of his body and is now not using it all. Could they please forward email/pass on message to paeds on call to double check they feel this wait is still appropriate in light of worsening symptoms.

Plopplupplip · 23/02/2025 07:53

Plopplupplip · 23/02/2025 07:51

Call the paeds secretary today. Ask if you could please email her/leave a message. Explain that you’ve been urgently referred but appt not till June. Your son has worsening weakness on one side of his body and is now not using it all. Could they please forward email/pass on message to paeds on call to double check they feel this wait is still appropriate in light of worsening symptoms.

Show quote history

If no luck with this for very much urgent appt, take him to A&E.

Plopplupplip · 23/02/2025 07:53

If no luck with this for very much urgent appt, take him to A&E.

Show quote history

I’m a doctor.
Speak to secretary first for someone to double check referral as I don’t have all the details (and making internet diagnoses is completely inappropriate) so I cannot assess how urgent it is and they may indeed have good reason to feel June is absolutely fine.
But with only what you have written here and no other context - I would want to make sure this had all been communicated and taken into account when deciding appt urgency.

Theextraordinaryisintheordinary · 23/02/2025 07:56

It’s awful when you worry about your children. Makes you feel sick to your stomach. I was going to say he needs an MRI. Focus on getting that done then you will know more and have a plan to move on. Sending a big hug. Hope he has a great birthday celebration. Pls update us.x

Edited to say, the MRI means they are taking it seriously and is the main test he needs right now. Glad that’s booked it. I work in healthcare. Take care.