Hi all - newbie here hoping for some advice 
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 
sorry, look forward to chatting with you all.
Gill x
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.
