Just waiting for my MRI results (suspected MS). Neurologist said he would have my radiology report back in 4-5 weeks and he would contact me straight away and let me know he has it. For background; I live in a very rural area of the UK with a small hospital, the neurologist usually replies within a few hours if I email him.
However, It’s been 6 weeks since my MRI and no email from my Neurologist.
I am guessing delays are normal in the NHS, but I am finding the wait hard.
Anyone else in the same boat/been in the same boat?
I hate all this waiting and it’s getting me down, I just want to move on either way
I’m afraid that this sort of thing is inevitable. It will be of no consolation to you, but when I had my last MRI I was told that the neurologist had to discuss the images with a neuroradiologist. Perhaps they had to make an appointment to see each other!
You could phone up the neurologist’s secretary, they should be able to give you a rough idea of when you should get an response.
Thanks Anthony, yes I might do that to check how long I should expect to wait! I don’t want to bother the neurologist for non-medical stuff and contacting admin staff might be the best way to do it.
I think if there was a more concrete date I wouldn’t feel so lost just waiting for an indefinite amount of time.
Just to second AD reply, last brain mri towards end December, I got results early March. As AD says, the neuro has to look at the mri before he will let you know, even if they have been reported on weeks ago. Completely understand how you feel about the waiting.
Same here actually 7 weeks tomorrow since my mri, not a thing! Scared to phone secetary incase I lose my temper think it’s distugusting the time it takes personnally. I am the same I would like to move on either way. All the best
Found out why I haven’t heard back. The hospital systems are down for an upgrade, including emails. So I don’t think I will be hearing back from Neurologist until the end of the week now!
I had a very different experience. They were not initially looking at ms. They were concerned it was something more ‘urgent’. I got sent to the ‘medical assessment unit’. After conversation etc. I was sent for Mri’ an hour later I was told it showed lessons & it could be ms, but I would need a lumber puncher as well as other tests to confirm.
I shared that while I understood the need for a LP I was very scared due to a bad epidural experience & therefore it would be great if I could have it that day, so I did not ‘chicken out’.
It was done an hour later.
I waited for 2 weeks for evoked potentials tests.
I got a letter saying all consistent with ms, so ’ probable ms diagnoses’.
i phoned neurologists office and explained a ‘probable’ was a bit stressful. The neurologicist saw me a week later. (After clinic time)
Contacted neurologist last week. He said he has my report, but I have no idea how long he will take to get back to me after he has had a look at it?! Secretary did say it took a bit longer than usual for the report to come back to Neurologist- Not sure what that means!
Chased it up today via email. No reply from Neurologist yet (which is strange as he usually replies the same day to say things like ‘it will take xx amount of time for this to come through. I will contact you then’ etc). So I am confused as why it’s all taking so long.
I know I haven’t been waiting as long as some people would for a reply, but as I live in a very rural area (with a small hospital) replies from consultants don’t usually take very long!
I am worrying about the lack of reply, even to from the Neuro to say he will check it in xx amount of time, but it’s hard not to read too much into all this!!
Admitted on the sunday (bank holiday) MRI monday, LP tuesday, dx on the wednesday, definite MS, that quick. I wasn’t even contemplating that it was anything like MS, bit of a shocker to be honest! That was 13 years ago. Hope you hear soon, don’t know what’s worse, the unknown or the slap in the face, either way, very stressful. Tracey x
I already have a congenital spinal issue, that my neurologist doesn’t think is the reason I have to walk with a walking stick at the ripe old age of 27! (Due to pain and severe tingling in my leg) He thinks it’s something like ‘inflammation of the CNS’ due to other symptoms. I am not so sure and think it is my spine issue.
Either way my brain and spine had an MRI, and I hope I will finally find out what is causing the symptoms. Really hope it’s not MS as that’s not as easy to treat as my other problem. But the waiting is horrible and I am not getting any better with it.
I may do what ZoeM says and request a copy of the report, if it’s my already present spinal issue I will be able to tell myself from my basic understanding of spinal anatomy.
Kind of got my MRI back, well my GP has had a look at it (still waiting for contact from Neurologist).
Anyway, MRI is clear and spinal issue (scoliosis) is currently not bad enough to cause my leg/mobility problems.
However, GP has noticed lots of weakness in my legs and hyper-reflexes
GP has said we need to rule out Muscular Dystrophy due to weakness and she will be calling the neurologist today! Apparently I need a muscle biopsy.
So some progress, definitely not MS but GP said ‘there is definitely something wrong’
Thanks to everyone on this forum, it’s been greatly supportive. Looks like I don’t have MS, but still in limbo as to what it could be. Hopefully not too much longer before the Doctors get to the bottom of it!
Hi there Keeping Well. It’s great news that M.S is ruled out. Rule Out a possible disease is opposite to Confirm a named disease/illness.
Your fear of the unknown has caused Heightened Anxiety. Try to be logical, think only of known & evidenced facts. Before your last post, you were almost convinced you had M.S. Only based on not having a quick reply in your remote area from the Neurologist.
Fibromyalgia, Polymyalgia, Lupus and umpteen other things are a Maybe. When your GP put MS in your head, your understandable anxiety began.
The not knowing, feeling in Limbo etc is tortuous. MS is no longer a threat, let’s hope the same for other Maybe’s. Exercise may help via physiotherapy.
There’s lots of hope that the evidence can Rule Out muscular dystrophy as well as M.S
I don’t necessarily think you can definitively say MS is completely off the cards. Only a neurologist can say that, and you’ve only had news from your GP.
I personally would be right on the phone tomorrow to the neurologists secretary to ask if I had an appointment lined up to discuss the MRI and your continued symptoms that can’t be explained by your existing diagnosis.
I hope you find some answers soon. Your journey seems quite arduous and twisty with it.
