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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

For doctors to have hidden this from me?

136 replies

JustsamanthaJayne · 16/04/2025 18:28

So I've been ill for several years, symptoms have worsened since last year year
One of my symptoms is a facial spasm where my brain feels like it's squeezing and then my mouth goes to the side for a few seconds it's been worrying me
So I had an mri in 2018 they told me everything was fine and then had another mri in 2024 I was told i have an pineal gland cyst which is incidental
So i requested my medical records and on my 2018 mri report it said I have a small retention cyst in my right maxillary sinus ( this would explain why I've had so many sinus issues and now it could explain the facial issues as well) but they didn't tell me about it??
Now I've suddenly developed a pineal gland cysts but no mention of the right maxillary cyst on on my recent mri scan?? Did it just disappear?
I don't understand why I'm getting 'incidentental' cysts at random like this and doctors are not concerned about this ?
My folate is low again with no explanation ? I constantly drained and having horrible nurological symptoms
Am I being unreasonable to be dismissed like this ??

OP posts:
Smallmercies · 17/04/2025 16:07

PremiumD · 17/04/2025 16:03

But you did engage.

Because so many people said stupid things 🙄

PremiumD · 17/04/2025 16:03

Smallmercies · 17/04/2025 08:12

My intention is this: I choose not to engage with threads where the OP has health anxiety, because it's pointless. So it's a screening tool.

But you did engage.

Smallmercies · 17/04/2025 15:47

JustsamanthaJayne · 17/04/2025 10:55

Thank you all
Let me get this clear to all the posters calling me a hypochondriac I am certainly not that but if I was that doesn't mean people could be horrible
I have actual symptoms actual physical and nurological symptoms
The cysts in 2018 I was never told about or 'reassured as i was never told I found it myself when I decided to get my medical records to advocate for myself as no one is listening as like you all are putting it down to stress
Not everything is health anxiety if I didn't have these symptoms I wouldn't be worried about health. The pineal gland cysts one I was told over the phone by my GP and it was me that pushed to see a nurologist which took a whole year to get the appointment of which I was told I could have ADHD which needs assessing for and I'm not disputing this as she is the professional here however it does not explain my actual physical issues ( for example the excessive water retention in my legs plus my joint pain which makes me struggle getting pants on)
I've been dismissed
Plus the constant folate deficiency which is being blames on diet when my diet isn't a problem
The cyst that was on my sinus would actually explain my constant sinus issues plus the fact my left ear is constantly blocked and I can't hear out of it I have not been able to hear out of it for weeks
It's only ever my left ear never the right
I think that cyst was relative to tell me. I have constant mouth ulcers as well
I'm due to see the mental health practioner in the GP surgery in the coming weeks not sure what will happen in that but once I've gone through that route and I still have symptoms there will be nothing more to dismissed will there
And by the way pineal gland cysts can cause symptoms they mess with your melotonin production which then has a massive impact on the rest of your body but I guess a patient can't possibly do her own research

Ok, you are definitely ill and the doctors are all wrong. I hope you feel better very soon x

Smallmercies · 17/04/2025 15:46

BlackSwan · 17/04/2025 12:33

If there was, you sure as fuck wouldn't diagnose it.

Why would I diagnose anything over the Internet?

BlackSwan · 17/04/2025 12:33

Smallmercies · 17/04/2025 10:04

You're right, the OP probably does have something terribly wrong with her 😕

If there was, you sure as fuck wouldn't diagnose it.

QOD · 17/04/2025 11:07

indeed - these ar symptoms of a pineal cyst
my daughter had/has 8/10

  • Confusion NO
  • Vertigo YEP
  • Double vision YEP
  • Headaches YEP
  • Upset stomach (nausea) YEP
  • Sleepiness YEP
  • Trouble walking NO
  • Vomiting YEP
  • Passing out (syncope) YEP
  • Coma NO
my daughter had been to the dr repeatedly since 2019 with variations of these symptoms, the last GP she saw sent her for a head mri and thats when they found what the describe as a cystic mass on her pineal gland
JustsamanthaJayne · 17/04/2025 10:55

Thank you all
Let me get this clear to all the posters calling me a hypochondriac I am certainly not that but if I was that doesn't mean people could be horrible
I have actual symptoms actual physical and nurological symptoms
The cysts in 2018 I was never told about or 'reassured as i was never told I found it myself when I decided to get my medical records to advocate for myself as no one is listening as like you all are putting it down to stress
Not everything is health anxiety if I didn't have these symptoms I wouldn't be worried about health. The pineal gland cysts one I was told over the phone by my GP and it was me that pushed to see a nurologist which took a whole year to get the appointment of which I was told I could have ADHD which needs assessing for and I'm not disputing this as she is the professional here however it does not explain my actual physical issues ( for example the excessive water retention in my legs plus my joint pain which makes me struggle getting pants on)
I've been dismissed
Plus the constant folate deficiency which is being blames on diet when my diet isn't a problem
The cyst that was on my sinus would actually explain my constant sinus issues plus the fact my left ear is constantly blocked and I can't hear out of it I have not been able to hear out of it for weeks
It's only ever my left ear never the right
I think that cyst was relative to tell me. I have constant mouth ulcers as well
I'm due to see the mental health practioner in the GP surgery in the coming weeks not sure what will happen in that but once I've gone through that route and I still have symptoms there will be nothing more to dismissed will there
And by the way pineal gland cysts can cause symptoms they mess with your melotonin production which then has a massive impact on the rest of your body but I guess a patient can't possibly do her own research

OP posts:
MistressoftheDarkSide · 17/04/2025 10:19

Smallmercies · 17/04/2025 10:03

Nay, I'm not.

Just checking as couple of floral user names seem to enjoy antagonism and contrarianusm for the sake of it.

Beeloux · 17/04/2025 10:14

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Smallmercies · 17/04/2025 10:04

BlackSwan · 17/04/2025 09:55

I wonder what some posters here would have said if I posted here some years back when my then 2 year old had an MRI and was given the all clear. He had a strange head shake, and visual symptoms. Instead of just not worrying about it, I continued worrying & shopped him round to a number of different neurologists with different neuroradiological teams & also a neuroopthalmologist, showing them the scan...
It was only the last neurologist, a full year after the original MRI, whose radiologist spotted that something was amiss with DS's pituitary gland. A follow up MRI revealed a cystic tumour there. Surgery and radiation followed.
Clearly this is a different case... in ours the original report was incorrect & many drs chose to just take it as a given that it was correct.

I think it's patronising to withhold information from a patient. And Drs can be wrong too.

You're right, the OP probably does have something terribly wrong with her 😕

Smallmercies · 17/04/2025 10:03

MistressoftheDarkSide · 17/04/2025 09:51

You wouldn't be "a rose by any other name" by any chance would you?

Nay, I'm not.

faerietales · 17/04/2025 10:02

I think it's patronising to withhold information from a patient. And Drs can be wrong too.

Nobody is saying that Doctors can’t be wrong.

But I don’t agree that it’s patronising to withhold information - there’s a reason you need medical training to interpret results and to be able to give diagnoses.

Smallmercies · 17/04/2025 10:02

Beeloux · 17/04/2025 09:50

Are you an incompetent ‘medical professional’ by any chance? 😊❤️

No 💕🤷‍♀️

BlackSwan · 17/04/2025 09:55

I wonder what some posters here would have said if I posted here some years back when my then 2 year old had an MRI and was given the all clear. He had a strange head shake, and visual symptoms. Instead of just not worrying about it, I continued worrying & shopped him round to a number of different neurologists with different neuroradiological teams & also a neuroopthalmologist, showing them the scan...
It was only the last neurologist, a full year after the original MRI, whose radiologist spotted that something was amiss with DS's pituitary gland. A follow up MRI revealed a cystic tumour there. Surgery and radiation followed.
Clearly this is a different case... in ours the original report was incorrect & many drs chose to just take it as a given that it was correct.

I think it's patronising to withhold information from a patient. And Drs can be wrong too.

MistressoftheDarkSide · 17/04/2025 09:51

Smallmercies · 17/04/2025 09:50

Thank you, I guess? Very helpful contribution! ❤️☺️

You wouldn't be "a rose by any other name" by any chance would you?

Beeloux · 17/04/2025 09:50

Smallmercies · 17/04/2025 09:23

Horror stories such as yours are very helpful to health anxiety sufferers ☺️❤️

Are you an incompetent ‘medical professional’ by any chance? 😊❤️

Smallmercies · 17/04/2025 09:50

MistressoftheDarkSide · 17/04/2025 09:48

There are a number of posters on MN who have a combination if "dog with a bone" syndrome, and "last worditis", and you my friend appear to be one of them.

Everyone is entitled to their opinion, to be sure, and I admit to having my moments where I've kept engaging despite futility, but honestly I don't get the obsessive need to shout down or come back at every single post that offers a response or anecdote at odds to your own position. Always comes with a side order of superiority, passive aggression or accusations of intent to cause harm, or that the poster is too ignorant to see the error of their ways.

Conversation flows, and what happens is you get an obsessive dam builder that obstructs that flow and no-one learns anything and no progression is made.

Thank you, I guess? Very helpful contribution! ❤️☺️

Smallmercies · 17/04/2025 09:49

Flamingo68 · 17/04/2025 09:46

Don’t blame them tbh, the way this thread has gone.

It's not her first thread on this topic 🤷‍♀️

MistressoftheDarkSide · 17/04/2025 09:48

There are a number of posters on MN who have a combination if "dog with a bone" syndrome, and "last worditis", and you my friend appear to be one of them.

Everyone is entitled to their opinion, to be sure, and I admit to having my moments where I've kept engaging despite futility, but honestly I don't get the obsessive need to shout down or come back at every single post that offers a response or anecdote at odds to your own position. Always comes with a side order of superiority, passive aggression or accusations of intent to cause harm, or that the poster is too ignorant to see the error of their ways.

Conversation flows, and what happens is you get an obsessive dam builder that obstructs that flow and no-one learns anything and no progression is made.

Flamingo68 · 17/04/2025 09:46

Smallmercies · 17/04/2025 09:41

OP is clearly not returning 🤷‍♀️

Don’t blame them tbh, the way this thread has gone.

Whattodo1610 · 17/04/2025 09:45

BobbleHatsRule · 17/04/2025 02:56

I think you have escalated an incidental finding to the cause of your symptoms and assumed a deliberate with holding of information and 'dismissal'

Loads of stuff shows up on scans which are incidental, insignificant and asymptomatic and not a problem. If Dr's spent their lives describing all the incidental, asymptomatic insignificant findings it would make identifying the significant issues a problem. They'd then spend ages reassuring patients it's a normal observation (in this case 13% of posters on here would have same finding on a scan). Many patients then focus on the normal incidental finding and tell everyone they have a lump, mass, shadow and worry they have a serious issue without ever being reassured. They then attribute every symptom to that and start to notice more symptoms they expect to have. Its unhelpful. Tbh it's best not to know!

Exactly this. Excellent post.

Nextdoor55 · 17/04/2025 09:43

JustsamanthaJayne · 16/04/2025 18:28

So I've been ill for several years, symptoms have worsened since last year year
One of my symptoms is a facial spasm where my brain feels like it's squeezing and then my mouth goes to the side for a few seconds it's been worrying me
So I had an mri in 2018 they told me everything was fine and then had another mri in 2024 I was told i have an pineal gland cyst which is incidental
So i requested my medical records and on my 2018 mri report it said I have a small retention cyst in my right maxillary sinus ( this would explain why I've had so many sinus issues and now it could explain the facial issues as well) but they didn't tell me about it??
Now I've suddenly developed a pineal gland cysts but no mention of the right maxillary cyst on on my recent mri scan?? Did it just disappear?
I don't understand why I'm getting 'incidentental' cysts at random like this and doctors are not concerned about this ?
My folate is low again with no explanation ? I constantly drained and having horrible nurological symptoms
Am I being unreasonable to be dismissed like this ??

This is interesting to me because I'm having the same issues. I had surgery to remove a cyst & lump from my nasal passage but it hasn't made any difference. I'm having awful neurological symptoms also, face, neck, ear. I don't know what to tell you but I am understanding the frustration & how irritating it is
Personally I'd just ask questions about it & ask whether it would make a difference to remove the cyst or why they didn't tell you. I'd find out more before my next step.

QOD · 17/04/2025 09:42

my daughter has just had an "incidental" finding of a 1.8 by 1.7 by 1.1 CM pineal cystic lass - they really ignore them which is crazy as she went to the dr with years of the repeated symptoms that are listed for pineal cysts... following with interest

Smallmercies · 17/04/2025 09:41

OP is clearly not returning 🤷‍♀️

Smallmercies · 17/04/2025 09:40

Fartughtyred · 17/04/2025 09:37

Oh thank goodness the ' Health anxiety cavalry have arrived!

Are you always so dismissive?

Read the full thread ☺️🙌