MRI summary sent to me & GP before appointment - LIVID!

New diagnosis and before diagnosis
1

Hi

Livid about this and felt like I wanted to vent and let of steam!

I’ve recently had an MRI scan after suffering from optic neuritis. I’ve been really worried about the results, naturally and am due to see the consultant again for the results this coming Monday 4th Feb.

I get a letter in the post this morning which was also sent to my GP giving all the brutal facts.

Bascally - it doesn’t appear to be good news for me. Now - really, sending me bad news in technical jargon that I can’t understand before sitting down and explaining it to me first? I was already a nervous wreck about it, and now I have 3 days of literal torture wondering and searching about all of the various things that have been flagged up - without any answers except the internet, which I’ve found to be always a bad idea because you end up convincing yourself you’re going to die.

DISGRACE!

I phoned the secretary and let rip. She said it was standard procedure to copy you in on the results and I should be grateful.

REALLY?

If we were talking about bunnions, then fair enough - but I’m getting the results of life changing brain scans that have not come back all clear, so I get those results without any explanation about what they mean to me or anything, and I’m supposed to be grateful.

I dont’ think I’m just lashing out at bad news am I? I’m entitled to feel angry about this? I will be complaining about it 100%, but is there any point?

So now I’m sat here with scan results with just Google for Company finding out about all kinds of nasties :frowning: I wonder if anybody can throw any light on them.

My internet fueled research suggests that it’s highly likley that I’ll be diagnosed with MS on Monday, or be told I have a strong possibility of it, but there is also another problem which seems to be totally unrelated from what I can see - but again, I dont’ know because he just bashed out the results willy nilly to torture me.

This is what the scan found

  • Orpital porition of left optic nerve was diffusely atrophic and hyperintense extending to optic canal
  • inracranial segment was however normal
  • There were 3 to 4 supra tentorial white matter lesions including periventricular lesions
  • This is suggestive of neuro inflammatory or demyelinating process in association with optic neuritis
  • There was some blurring of the grey white matter junction in the left oribito frontal region
  • This had poorly defined signal charge extending to left frontal horn suggesting an area of cortical dysplasia

I’m mean come on - “cortical dysplasia” and you pop it in a letter. How am I supposed to know what that is all abobut and how is it supposed to do anything than torture me.

Have a quick look online, supposed to be having seizeures, I have none, supposed to be epileptic, I’m not - it’s just a joke?

Vent over, thanks for listening! x

2

Should have ready “peritventricular lesion” not lesionS

3

I wanted my results sent to me as well as neuro and gp. They must not check when your next appointment is, and just send it when they get it.

It is complete jargon to me, in mine i only understood “dehydrated disk”. I like most went straight to google and found nothing but it causes you to be in a wheel chair. But thats not what it is, the dehydrated disk is gone now. Iam fine.

We are human and when we get results we have to look. Even if it wont make sense to us. I don’t want to tell you not to look at it because we all do.

Can you speak to the gp and see if they have an idea what is going on? Maybe they can give you an explination of what it means.

I personly would hide the letter tonight and try to relax (easier said than done i know), but their is nothing you can do at the moment.

Wish you all the best

Darren

4

I’m lucky actually, the inlaws work at my local GP surgery. I’ve spoken to my GP and he couldn’t answer because it’s too specialist / technical.

I’m stuck until Monday. I know I’m expecting grim(ish) news, it’s just really annoyed me that I’ve had to sit and stress and freak about it as a result of somebody thinking it was a fine thing to do… or not thinking at all?

5

I was sent my MRI results in the post five weeks before my appointment with my Neuro. I was diagnosed with RRMS last year. Rizzo may be along later and will be able to explain the results better than any of us if that is what you want. I know how you are feeling and I know it’s hard but try not to stress too much. Best wishes, Amily x

6

Not thinking at all i think. They must get the reasults photocopy and send to everyone. No thinking involved on their behalf.

Even the mri technition can’t tell you what they see while your in the tube. Its so frustrating.

I must admit I would be miffed too, just not knowing what the information means.

It is nice to have a copy of the results for future refferance but only when you know what it means. Maybe have a word to see if they can delay sending a copy next time, or give you one at the oppointment.

7

Absolutely - I deffo want a copy of the results, but I’d have just liked it explained to be properly by a Dr rather than relying on Wikipedia. I mean, I may aswell pull on a white coat myself? lol!

I’d almost certainly get struck off, so far over the last few months, I’ve managed to convince myself I’ve had everything from optical strokes to ringworm… LOL

8

I don’t think I would be happy about that happening either. My advice see neuro on Monday and then maybe go through

PALS afterwards (patient advisory liason service). I totally agree now you have days to stew over the results. Ahh the NHS… I am yet to hear about a good neuro experience.

9

@alisonmumof2

I don’t want to be too down on my treatment to date. I’ve managed to sneak into Moorfields which means I’m in the Queens Square set of hospitals - and I couldn’t be in a better place for treatment? Thought my first experience of anything major with the NHS had been quite good up until now compared to some of the things I’ve read on here, but I did go doolally this morning on the phone!

Combination of anger at the results and anger at the letter I think! Cooled off a little now, but still think it’s out of order?

10

Hi MGW, I know how you feel. I was rushed into hospital in 2005 with sudden mobility problems and paralysis in one foot and no bladder control. I had MRI sscans and lumber puncture then because my foot was paralysed I was sent for another MRI during visiting hours. My eldest son who was only 18 at the time had come to visit me. When I returned to the ward from the MRI the nurse said I think the neurologist has upset your son and he has left. When I asked her why he was upset she said the neuro had told him what was wrong with me. I said well do you mind telling me because I would like to know what is wrong. It was then she said that I had ms. I was absolutely furious and told her that he had no right to tell anybody before me let alone my son. My son then had to go and phone my husband at work to tell him because he didn’t know whether to tell me or not. The nurse must have told the neuro how angry I was because the next day he came to see me and apologised and said he didn’t realise my son was only 18. I told him he shouldn’t have said anything however old.

11

I can quite see why this has upset you. My results were sent to my GP who explained the results to me on a visit. That was bad enough but sending results of something like an MRI, I find just staggering!

I do receive copy letters from Neuro and ms nurse but they are standard reports on my progress.

Wendy x

12

I think they are supposed to send copies of everything to GP and patient, but it doesn’t always happen. Tbh, they are between a rock and a hard place: some people want the copies and some don’t. Sod’s law that they’ll get it wrong some of the time :frowning: Sorry it gave you such a fright :frowning:

I can interpret your radiology report for you, but please remember that I am not a radiologist or a neuro.

“Orpital porition of left optic nerve was diffusely atrophic and hyperintense extending to optic canal, inracranial segment was however normal”: there is evidence of optic neuritis in your left optic nerve (the nerve that carries signals from your left eye to your brain). This is in the part of the nerve close to the eye. The rest of the nerve was fine. Diffuse means ill defined, a bit “cloud-like”. The atrophic and hyperintense bit means that the damage the optic neuritis has done shows up as black spots (atrophy) and white spots (hyperintensities) on particular scans (T1 and T2 respectively, fyi). Black spots indicate that the cells in those areas have died. (This is not great, but it is NOT as bad as it sounds. Severe inflammation often causes cell death and black spots are quite common in MS. Plus, yours is diffuse, which means that the surviving neighbouring cells will be better able to compensate.)

“There were 3 to 4 supra tentorial white matter lesions including periventricular lesion”: You have 3 or 4 lesions in the cerebrum. The brain consists of the cerebrum (the big bit on the top), the cerebellum (the smaller, roundish part underneath the back of the cerebrum) and the brain stem (which becomes the spinal cord). Periventricular means next to the ventricles. The ventricles are the “lakes” of CSF (cerebrospinal fluid) in the middle of the brain. CSF is a bit like oil in an engine and the ventricles are the oil reservoir. The matter around the ventricles is a prime target for MS.

“This is suggestive of neuro inflammatory or demyelinating process in association with optic neuritis”: Your lesions are consistent with demyelination. This does NOT mean that it must be MS though. Although MS is the best known demyelinating condition, there are others. Your neuro will use these results and everything else to decide whether or not MS is the best explanation.

“There was some blurring of the grey white matter junction in the left oribito frontal region. This had poorly defined signal charge extending to left frontal horn suggesting an area of cortical dysplasia.”: The orbitofrontal region is the bit of the frontal lobe (lobe = area) of the cerebrum that’s closest to your eyes. The frontal lobe is basically the front half of your cerebrum. The left frontal horn means the tip of the lateral ventricle closest to your left eye. The brain consists of three main types of matter (i.e. “stuff”): CSF, gray matter and white matter. The gray white matter junction is where gray and white matter meet. In this case, the gray matter is the outer layers of the cerebrum (which together are called the cortex, which is where “cortical” comes from) and the white matter lies inside that. (Gray matter does all the “thinking”, white matter carries the info between different parts of gray matter.) The fact that they think it is cortical dysplasia means that they think it is congenital, i.e. a natural part of development. If you have never had symptoms associated with cortical dysplasia (e.g. epilepsy) then it is probably nothing to be concerned about - many people have asymptomatic congenital abnormalities in their brains. (The brain is pretty amazing at working around bits that didn’t quite work out as planned!)

Hth.

Karen x

13

Hi Rizzo

Thank you so much for that breakdown, it was really helpful! Much appreciated :slight_smile:

14

Yes, the NHS constitution does say that the client should have a copy of every letter that a consultant writes to a GP.
So, for MGW to get one is not a matter of luck - it’s a right! And, it does not always happen.
You could look at it this way - you know it is not going to be a matter of sweetness and light when you go into your appointment. At least you have a chance to find out what you want to ask questions about.

Of course, if the Neuro had thought for a few seconds, they could have added that they would be discussing the results with you on Feb 4th. That might have made it clear that the letter was aimed at the GP (which it should have been) and not at both of you. I don’t think that you have good reason to tear into the Neuro on Monday, but you could point out that getting a letter like that out of the blue was rather a shock.

Geoff

15

Hello, I am sorry that you feel like this. I can relate but the other way round! I had a meltdown last week because I hadn’t received a copy of the letter detailing my MRI results to my GP. I went on Monday to see my GP and asked him to explain the findings, which he did. The news wasn’t good and I am not looking forward to my follow-up appointment in February but at least I have a good idea of what is coming. I was expecting to get a letter, didn’t get one and got quite miffed!! Completely different reaction to yourself, just goes to show we all react differently which makes it a no win situation. Good luck for your appointment. Sam x

16

in our PCT, we receive no copies of anything at all. It cost me £25 to get a copy of the MRI result and CD (which included paying for the post) and I had to be happy to complete a letter of authority to receive. It seems to be different all over the country.

Sorry you had to hear yours in such away that it upset you so much.

17

Hi, it is very frightening when we read results letters, which are full of medical jargon. Iam only too happy that we have Rizzo in our midst, bless her.

She has calmed you down and that`s a good thing.

You dont have long to wait till you see the neuro.

neurologists and other hoispital specialists can sometimes forget that their language isnt our`s, when they either speak to us or write about us.

At my hopsital, I was asked if I wanted copy letters and I signed a form to request them.

I daresay I could`ve said no ta!

If you`d rather not see your results until you see your neuro, then speak to him about that. I think your GP would rather you spoke to the neuro, as he is your consultant.

luv Pollx