Not posted for a while as I have been waiting on results from my mri on my upper spine since 15th July. I finally got them and same as by head scan, all clear no abnormalities.
Soā¦. What now I thought?
I am pretty sure I can rule out MS but what is wrong with me?? Why has a letter from the neurologist not been sent with the briefest 3 line results letter that I have patiently waited for?
I was getting myself so wound up, surely I would need an appointment face to face with the neurologist to try and get more information about what I am experiencing, (a 10 minute telephone consultation was not enough to explain what was happening to me)
I called the consultants secretary who was really nice, āoh yes yes, thereās a follow up letter too, just to advise youāve been dischargedā
WTF!! āOh no you donātā I said. āI have waited for a result from a scan for so long because the neurologist said he wanted to rule out some things, but there are still other things this could be??, I need to see him face to face, in 6 months the only person I have actually seen in my gp when I first got these issues, so no Iām not accepting this!!ā
I think she was a little taken aback but like hell are they just tossing me aside, just because my head and spine scan are ok, I am still in agony with a neurological issue which I was referred to this neurologist by my GP so surely they need to establish what it is and do further tests.
Itās like they just wanna get you off their ālistā as quickly as possible. Well no way! I am not stopping until I know why my body feels broken 
Well, good news as far as it goes, but I completely understand that it doesnāt go far enough to explain what ails. I know it feels like being fobbed off, but thatās probably not how a medic see it. Most likely they think: this patient doesnāt have a something life-threatening or obvious, so happy days, letās move on to excluding those nasty things in the next patient. But in any decent system the doctor would at least sit you down and explain nicely why they think they canāt do anything more for you now so it feels a bit less like a brush off! Some of them were never very good at that, and COVID has certainly made it a lot worse. Time for a catch up with the GP, I think. But as someone once said, GPs spend most of their time gently explaining to patients why theyāre going to have to put up with whatever is troubling them, so that may be more of the same. Good luck anyway.
I get that but I just want a face to face with someone, even my gp is a telephone consultation. Just feel fed up at the moment
What a flipping pain yelloweye. I donāt blame you for being miffed, pād off, annoyed, worried, just utterly aggravated by this brush off from the neuro.
As youāve said, you may not have MS, but you do still have the problems which took you to the neurologist in the first place. Surely the point of seeing a specialist isnāt to rule one singe diagnosis in or out, itās to find out what is wrong. And then hopefully to offer some kind of treatment??
Have you heard of Functional Neurological Disorder? Maybe have a look at What Is FND - FND Hope International It seems that a lot of people with symptoms mirroring MS actually have FND.
I do hope you get to see the neurologist again. Maybe if youāve been seeing an MS specialist youād be better off with a more general neuro?
Sue
Yeh I have, Iāve done all sorts of symptom checking, comparing symptoms, reading up on different things it could be or things my symptoms are related to, Iāve noted everything daily and tried to be realistic in that this could just be something that will eventually in time get better and with the meds it had to a degree but I just feel Iāve waited and waited purely on results of these MRI results.
When I spoke to the consultant over the phone at the beginning of July one of the first things he asked was when did I have my first COVID jab, then in his letter to my GP as well as his concerns for requesting the spine MRI, he said it could be GuillaināBarrĆ© syndrome which would have been caused by the jab??? Guess what I really wanted was for an appointment just to discuss what else it could be and if it is indeed due to the jab then is the pain I have expected to subside? I am 50 but on days feel like Iām in my 90ās