In diagnosis Limboland - awaiting MRI results

Hi all - newbie here hoping for some advice :slightly_smiling_face:

I’ll try to keep this as brief as possible but happy to provide more info. I have been experiencing MS-type symptoms for roughly 25 years, I can provide the list! I haven’t felt the same since being diagnosed with Glandular Fever roughly 25 years ago. Finally diagnosed with Fibromyalgia 3 years ago.

I was admitted to hospital 3 weeks ago after experiencing pre-syncope and chest/back pain. I collapsed whilst walking my dogs, thankfully my partner was there. I’m always exhausted, in pain, tingling/buzzing, you name it. However it was noticed in A&E that my heart rate was rocketing when I stood up and I was almost passing out, ECG/Chest X-Ray all fine, as were bloods, so I am awaiting an appointment to be evaluated for Postural Orthostatic Tachycardia Syndrome (POTS). Whilst being asked ‘what happened’ by all of the consultants who saw me whilst in hospital, I mentioned to one of them that although I hadn’t collapsed before, i’d been dizzy/off balance/falling to the left side for a few years. That seemed to get the ball rolling in a different direction…

An MRI was requested by one of the consultants who had conducted a neurological examination, his reason being ‘your neurological results were NOT NORMAL’… he really emphasised the ‘not normal’ part. I didn’t feel ‘with-it’ enough to ask for more detail due to slurred speech, exhaustion and brain fog. All I know is I was staggering all over the place during the tests that required I stand up or walk. Nobody communicated with me, after IV fluids and 4 days I was allowed to go home to await the MRI appointment. In my copy of the discharge letter to my GP, it stated I had ‘cerebellar signs’ including nystagmus and past pointing, and also that I should be worked up for a PoTS diagnosis after MRI results. Now, my own investigations with all of this does throw up possible MS, although nobody at the hospital mentioned MS. When I look at all of my symptoms there is a huge crossover with many different conditions, but every time I read about MS I just feel ‘that is me’, and has been for a considerable number of years. I’m a 49yr old female. I then read that there is an EBV/MS link and as I said, I have not felt right since being diagnosed with Glandular Fever (EBV) some years ago. I also read that PoTS is more common in MS sufferers than control groups, and that an MS diagnosis can often follow a Fibromyalgia diagnosis. I should stop reading, I know, but it’s difficult. I’m not panicking about any of this, i’m just someone who needs to understand what is going on. In my experience, you have to almost diagnose yourself and then go to the GP with your findings and ask them to refer you to the right person to confirm.

I had the MRI on 28/02/24, and actually collapsed into the arms of the radiologist, due to the PoTS symptoms. I wasn’t told when discharged from hospital who would be giving the results or how I would receive them, or even the name of the consultant the results would be going to. After much digging, today I spoke to the consultant’s secretary, who was able to confirm on the phone that the MRI results were ‘available’, and that she would email the consultant to tell him i’d been in touch and that he would either call me directly or send a letter to my GP?? No timeframe given and I didn’t bother asking.

Everything I read tells me it’s the responsibility of the doctor who requested the MRI to give you the results. Not your GP, as they usually aren’t in a position to interpret the report. I don’t even know if a neurologist has looked at my MRI, i’ve no follow-up appointment. Also no spine MRI was requested, only head, maybe because the Dr specifically stated ‘cerebellar signs’? Does any of this sound familiar? I’m now thinking that if they’re just sending a letter to my GP, that’s because they are going to say the MRI was clear? Although the guidelines state it’s the Dr who ordered the MRI who should discuss the findings with you, I have read posts from others stating they got their results from their GP. I don’t know how long to wait before contacting my GP to ask if they have received anything? I know many of you will be in the same position of just needing an answer, whatever that answer may be. I just wanted to reach out and see if anyone can relate. If it’s all clear do they just not contact you?

I didn’t do a good job of keeping this brief :rofl: sorry, look forward to chatting with you all.

Gill x

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Who wants to be normal, eh?

I should phone the consultant’s secretary and see how things are coming along. They’ll probably send the letter to the GP at the same time as they write to you. But it can’t hurt to chivvy things along.

I am sorry that you’re having such an awful time of it.

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Haha indeed, what is normal anyway? :grin:

The secretary said today she’s going to email the consultant to tell him I was looking for my results and he’d either call me directly or write to my GP. I just wondered if others had their diagnosis relayed by their GP, or if a letter to the GP was indicative of a clear MRI. She didn’t mention a copy being sent to me. I guess I’m trying to see round corners and looking for clues as to what they’re going to tell me. Of course nobody can tell, I’ll find out soon enough I guess.

This is a brilliant forum btw, glad it was suggested to me today :+1:t2:


Hi Gill, I was diagnosed with ms in 2022. I actually rang the secretary of the consultant who ordered the mri, she said she would e mail the results to my doctor who I happened to have an appointment with that day. The doctor gave me my results, she confirmed ms and said the neurologist would be in touch. All appointments/scans etc go to my ms nurse doctor and consultant. It means everyone is kept in the loop with your care plan. Angie :heart:


Hi @littleone :slight_smile:

Thanks for confirming your GP gave your diagnosis, i’ve read so much conflicting info on the ‘who’s supposed to do what’ subject that I wasn’t sure, so it’s good to get that info.

I don’t know if my GP will have received anything yet, the secretary said yesterday that i’d receive a phonecall or a letter would be sent to the GP. I’m hoping she doesn’t mean by snail mail or it will never get there! I’ll give it until Friday then contact my GP surgery. Although i’d hope if they received a letter about me from a consultant the surgery would call me and ask me to make an appointment to discuss - who knows, it’s all second guessing isn’t it? Will find out soon enough.

Thanks again
Gill x

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Hi Gill, yes I would be calling your doctors surgery to chase it up. They sometimes don’t see the urgency in that we are waiting for the results and want to know asap. Keep in touch and let us know how you get on, take care Angie :heart:

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Thanks Angie :+1:
I called the GP surgery this afternoon, they said they hadn’t received the results yet “and they didn’t come in today’s post either as we’ve opened that” :roll_eyes: I’ll try again on Friday, if no joy i’ll get back onto the Consultant’s secretary. What she said on Monday was that the results were ‘available’, but it didn’t sound like a letter had been written yet. It could take another few weeks if the letter is still to be dictated, typed up and sent via Royal Mail… which I cannot believe is the process in 2024. GP Receptionist told me it depends which hospital and even which department the letter is coming from whether it will be received via their online system or in the post.

I can deal with whatever they tell me, I just want to know.

If it was me I’d keep chasing them, my results were emailed over to my gp. You’d think they would do that knowing your waiting for them, take care Angie :heart:

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Hi, I was in the same situation a couple of years ago and it drove my up the wall. I reached a stage where the consultant’s secretary had my vital test results but would only send them by snail mail: a week for the secretary to come back off holiday, 4 week wait for the typing process and then for some reason 2 weeks in the post… They refused to email me the letter on “data protection” grounds.
The solution I found was to give them an email address for my GP surgery. That’s an NHS email so they felt it was “secure”. They sent it to the surgery and I picked it up there in person.
The test I was waiting for was a lumbar puncture, and the result (positive) effectively confirmed MS for me, though the letter didn’t say that. I wouldn’t read much into how they choose to communicate (or not): NHS admin is appalling. Keep records of all your letters, test results etc.


Hi @Leonora - that’s torture, sorry you had to deal with that.

Good idea, I will get an email address from the GP’s surgery tomorrow and give it to the consultant’s secretary when I chase her tomorrow. It really is ridiculous putting things in a letter and sending via post, the postal service is shocking. I’m also awaiting an appointment for an urgent cardiology referral and it would be good to know if I have an issue with the area of my brain that controls the autonomous nervous system… or is something else causing the new BP issues as well as all the other pains, fatigue, tingling, ataxia, balance issues etc that i’ve had for years.

Thanks for confirming you did (eventually!) receive confirmation of your LP results via a letter to your GP and not via a neurology appointment :star:

So I got hold of the Secretary today and she actually read the results letter over the phone to me, then emailed it. Long story short, no mention of lesions. Restricted diffusion in the left cerebellum noted by the radiologist, after discussion at their neuroradiology meeting they decided it was arachnoid granuloma, no follow up required.

It may sound strange but I am so angry and upset. I still have all the symptoms but no cause. And a rather woolly results letter.

I will try to see my GP on Monday and request another brain MRI as well as spinal. I’m not happy with the letter. Still in Limboland :pensive: