Well went to my neurology appointment this morning, she hadn’t looked at my mri scan, she asked me if it was clear.didn’t really ask many questions did a quick examination. Then told me I had migraines and that’s what’s causing all my symptoms well I would have been Ok with that diagnosis but how can it be just migraines when I have all the symptoms without the blurred vision. And for the chest pain /spasms she said "I don’t know some times we get pains that are unexplained " what do I do now feel like giving up and just trying to cope. Sorry for the moan Mandi x
Hey, you’re allowed to have a moan sorry to hear you’ve had a bad time. Is there any chance of seeing another neurologist? I think you’d go through your GP who would refer you to someone else. Now, it may be that the diagnosis is correct? But hearing it from someone with about as much sensitivity as a goldfish does not fill you with optimism.
the good thing my Neuro did was to say that he may never be able to diagnose what I have, that’s just how it goes, but it was definately the way I was treated. He told me that from my symptoms he knows there’s something going on, it’s just figuring it out. That’s how you should have been treated.
Best of luck, don’t let the silly moo get you down xx
Thanks for the reply I’m just a little confused about everything,don’t get me wrong I don’t want to be diagnosed with ms but things just don’t seem to add up… I’m back at the gp office tomorrow to express my concerns and to see what else can be done. I’m happy with the diagnosis ofsilent migraines. But not happy that these other symptoms are linked as they are still there when I don’t have episodes of blurred vision. Oh well just wait and see I suppose. Thanks again
Hi, what are your symptoms hun?
I was messed about by neuros for years…mis-dx`d with PPMS for 11 years…now not MS at all…but a genetic thing no-one knows how I got it…just gotta live with it…suggest you ask for another referrall, as you say.
Blurred vision on and off, crushing/stabbing chest pain to the point I can’t move for hours, last week I collapsed in the shop coz the pain was that bad. ,numbness in toes, fingers, warm water feeling running down legs, tingaling in hands and feet accompanied by shooting pains.patch on thigh that is very sensitive, numb area on back ubove bra line. And in my latest episode I had weakness down my left side which has now cleared up. Also very forgetful at times and can get tired very quickly and not walk far coz my legs get so heavy. Prob a few more but that’s it off the top of my head. Oh poor you maybe one day they may work out what’s wrong.
Sorry poll just read my reply back and sounded wrong the way I worded it. I hope they fine out whats wrong with you or are able to help with your symptoms, must drive you crazy not knowing what’s wrong, sounds like you have had a horrid time xx
I think it is very poor that you should have come away from an anxiously-awaited consultation feeling that the specialist couldn’t be bothered even to look at the radiologist’s report on the MRI, never mind the MRI itself, and really didn’t seem very interested in things that are troubling you and that do not seem to be explained by her dx.
It is often the case that specialists are deliberately breezy and unbothered in their manner, because what they are trying to do is to reassure the patient that they haven’t got some dire disease. An admirable aim, but some are better at it than others! A specialist who pitches that one slightly wrong can easily come over as over-casual and can’t-be-bothered, even though that is not what they mean to be at all. Do you think there might be an element of that going on here?
Sorry you have had such an unsatisfactory day.
Thanks for reply Alison. I just feel as if I was rushed I had everything in my mind planned out to what I needed to say and didn’t really get to talk she only knew a handfull of my symptoms. I don’t think it helps that I’m quite a nervous person so maybe I made her be on edge but as a neurologist shorly she should be used to that. Oh I just don’t know. just want to be listened to as if I’m not some mad woman or hypochondriac. just a normal mummy that wants answers
If your neurologist was being examined on how satisfactory a consultation that was, it would be an epic fail, don’t you think? Did the patient feel that she she had your full attention? No. Did the patient feel listened to? No. Did the patient feel put at her ease? No. Did the patient leave the consultation feeling reassured that the clinician was engaged and had a good grasp her case? No. Did the patient leave the consultation feeling confident that she was in good and safe hands (whether she agreed with the clinician’s opinion or not)? No.
See what I mean? YOu didn’t do anything wrong - this isn’t your fault. A nice glass of wine and a good night’s sleep is what I would recommend, and try not to let all this get you down. I hope that tomorrow is a better day.
Hi Alison,think you got this down to a T. thanks for this I will bring this up with the doctor today and will also write everything down so he has a copy then hopefully I may get somewhere. Thanks again Mandi
Hi again, that`s a bucket load of symptoms and it is rediculous that you cant get better service from the neuros. I have lost faith in my local neuros!
I know it’s a lot. Went to doctors today, they have ordered chest x rays, and an ecg I’ve had these last year and didn’t show anything but who knows this time. Also they are waiting on report from the neurologist and once all results are back then they will go from there… At one point he told me I could pay for a second opinion but it won’t get you anywhere charming I then broke down and told him what’s what, and I’m not giving up till they know what’s going on.fingers crossed they fix me. Thanks for listening x
You’re in the right place hunni, quite a few of us in same boat. It wasn’t long ago I was declaring my diagnosis of MS! Then they changed their minds, thought it was a tumour, then changed their minds and thought it was epilepsy, now they are looking at my Temporal Lobe and referring me here there and everywhere. It’s a crap situation but hang in there! I’ve been on this ride for 2 years now…boring! Some have had to wait ages to find out what’s going on; some are a bit more fortunate in that they find out sooner. It’s a weird old game but hey ho! You will get through it chuck xxx
Thank you for your kind words and yes it’s a ruff old ride. It has been 4 years for me to even get this far.Fingers crossed they fix us soon. Xx