New here - questions regarding MRI results - sent to GP

Hi All

I’ve been on the periphery of this site for some time but haven’t posted as every query I have seemed to have been asked before (sorry for ‘lurking’)

I now have a question that I cant find an answer to, but will give a brief history first (promise I’ll try and keep it as short as possible)

Medical history

CFS 1994 – 2002 been 100% recovered since then

Stomach problems 2012 – tested for celiac etc, sigmoidoscopy all negative, H Plyori infection found and treated, left me with a stomach ulcer, also treated and recovered

Shingles April 2013

Saw the shingles as a warning sign that I wasn’t looking after myself, improved diet, sleep, exercise, reduced stresses and stopped working over time etc and had 4 months of feeling the best I think I’ve ever felt.

Then, October 2013, started to feel ill, everyone around me was suffering with flu, thought I was coming down with that, very lethargic, achy etc but no cold symptoms such as runny nose/ sore throat came.

After 4 weeks of feeling exhausted, suffering from headaches and noticing that I was using wrong words (example sock instead of shoe etc) I saw my GP, who ran some general blood tests (including Vit B12) all negative and ordered me to take a week off to rest to see if symptoms improved.

Took the time off but started noticing more symptoms, legs, especially left felt extremely heavy (felt like I was dragging it) stairs became mountains! My left foot started to burn like sunburn but no visible rash or heat to touch and a buzzing sensation down spine when I bent my head.

In December had very painful left forearm, not in joints, and pain in right hip (saw a physio cos Dr said troch bursa but physio felt it was more nerve related)

GP referred me to Neurology in Nov, eventually saw SPR neurologist in January. By then symptoms were subsiding, fatigue being the main symptom remaining and still had the buzzing back. Very brief appt, she seemed more focused on my CFS in the past, took no real medical history, did a brief examination, not sure if this was ok or not, only thing I do know is I couldn’t feel the tuning fork on my left foot. She said that she couldn’t find any neurological problem as nothing she knows of remits and as my symptoms were assymetrical this also did not match with anything (Ive seen since that this is rubbish and MS does have both these things), she sent me on my way saying she’d do a brain MRI ‘to be sure she wasn’t missing anything’

Beginning of Feb symptoms started to return, along with an extremely painful right elbow and the feeling of having a cold cuff around top of right arm, numbness in my right ring finger. A buzzing in my right ankle.

After chasing up the MRI (SPR had gone on holiday without requesting it!) I had a brain, thoracic and cervical MRI mid Feb with diffusion and have been chasing results since (They sat with the SPR for 3 weeks waiting for dictation!) Neurology weren’t particularly helpful and just said that the results would be sent to my GP.

Spoken to my GP surgery today who said they would chase and get the results. They then called to say the results been faxed through and have made an appointment for me to discuss with my GP on Friday. Not given anything away about them though.

So, here’s my question, sorry it took a while to get there… Is this normal? Do results usually come back to GP? Or can I assume from the fact that they have that there is nothing neurological showing? Or is it just that the GP are trying to speed things up. I would have thought they’d recall me for a follow up appointment if there was something showing?

Thanks for taking the time to read and thanks in advance to anyone who replies x

Hi -Sorry to hear your’re having such a frustrating time.

There seems to be all sort of different approaches to managing tests, results etc. I had a letter at the same time as my GP - who then rang me because it’s obviously a bit scary to get a letter saying there are issues on the brain scan that need to be referred to neurology! I think maybe I would have preferred to have that conversation face to face - although the wait for that appt would have driven me ( like you!) crazy!

I’m assuming the Friday appt is tomorrow - I hope you get some answers. Do keep us posted on here please!

Good luck,

Cxx

Hi cygnet, thanks for the reply, somehow my post has come through twice It has amazed me all the different stories on here of how people we’re diagnosed/ not diagnosed etc. Can imagine getting that letter was awful. Seen your post about limboland and hope you get the answers youre looking for soon. Yes, appt is tomorrow, just started panicking a bit in the last couple of days. Hopefully this time tomorrow I should have some answers and will update Take care x

So now it’s Friday - I’ve got everything crossed for you & I’m hoping the appt goes well!

Cxx

Hi So I just got back from gp… MRI is completely normal - phew! I know from other posts on here that can sometimes happen and still be ms but for now I’m going to try and move on and get an answer for what’s going on. Dr was great, got to call neuro on Mon and ask for a f-up appt, gp has upped my amitriptyline for the pain, referred me for bloods again along with some rheum factor bloods and referred me to muskuloskeltal service to get my hip, elbow etc checked out. Just wanted to say thanks again to those who replied to my posts and to wish you all the best,ccygnet i hope you get answers soon. I think this forum is brilliant and you’re all amazing supportive people. I’ll update when I know more, might help others who are awaiting diagnosis to know it’s not always ms. Best wishes x

PS forgot to say cygnet … Thanks for the mssg this morning x

Hi hun - I’m back!

Glad to hear the mri was clear & your GP is supportive - I’ve been lucky with mine & feel very grateful after reading some of the accounts on here!!

I was interested to see you said you were going to try & move on… I had some really good advice recently from a friend ( who herself has been quite unwell.) She said " focus on what you haven’t got…" which as I got to Limboland via a 2 week cancer referral & investigations for a brain tumour seems very useful! Even the neuro saying “I don’t think this is MS” helps push me through mentally at the moment. Like you, I’m focusing on staying positive & doing everything I can to help myself.

Take care & stay in touch

Cxx

Hi Sorry for the delay replying had a couple of feeling rough days. Thanks for the reply, I think your friends advice is fantastic and blimey what a truely terrifying experience you have been through! Yes, going to try and concentrate on finding out what is causing these symptoms and work on improving my health. Will definitely stay in touch, hope everything works out for you X