Tonight I have had some huge progress to the point this normally straight face has been in tears! I put in a complaint through nhs highland and a lady got back to me and within a short time has arranged for me to go back to the neurologist for an extended appointment to discuss my test and what they can do next!
finally someone in front of me to talk to and let this out!
Brilliant news. Fingers and toes crossed that you get some support at last.
Nice one
Mick
That is absolutely fantastic. Let us know how you get on.
Paula
That’s great news!
That sounds more like it. Let us know how you get on.
Mags xx
Great news. Credit to you for doing something about it too!
Hi everyone,
i just wanted to do a bit of an update after a very very long year of trying to get answers and going through drs and nurses being pretty horrific in their " there is nothing wrong with you" attitudes. I managed to see the neurologist again after complaining officially and was then passed onto another much more understanding neurologist at the same hospital who ran every test possible to try and help. I took a fairly big progression then just after and returned to him and have just had a diagnoses of ataxia which he believes is called by Ms but as yet cannot diagnose the MS as one new lesion has appeared but nothing to yet say it officially but finally getting some help to treat symptoms so don’t give up to those going through this horrible period of not knowing! It may take years for them to know if it is Ms causing ataxia and other symptoms but finally I’m being taken seriously!
Hi Missmillie,
I’m sorry to say but every story I’ve heard involves the patient not being taken seriously. Unless you actually collapse or are admitted to hospital then your either depressed or exaggerating a much more mild version of your complaint. I’m currently due to see a Neuro after some 30 odd years. I usually see a GP when I’m ill to be told it’s usually my fault in some way. I used to smoke, must be depressed, burn the candle at both ends etc. It’s made worse by the fact people look depressed when they’re ill but doctors don’t appear to understand that. I’ve explained to my doctor that I’m perfectly happy and have a blessed life until I get muscle spasms that rip me apart. Then I’m told depression does that. however happy I was before the spasms started is inconsequential apparently. I hope you have better luck now they consider you sick.
best wishes
Mark.
Hi Missmillie
Glad to here you’re getting somewhere. I ended up being abandoned by the same neuro as you. Just discharge letter with no diagnosis and comment about not giving me a routine review. Initially I was furious, but it was the week before I had some big exams coming up, so I had to push it to one side. After my exams much of the anger had gone and I just felt tired of the whole thing.
I ended up not complaining, & decided to just get on with things as they are. My symptoms are mild just now, and life is so busy that I don’t have room in my head for all the worrying and rage about the stupid neurologist who can’t even be bothered to see his patients.
If things flare up again, then I’m going to make myself as difficult to ignore as possible. I’m also going to insist on a different neurologist. He’s a really nice man, and is a Parkinson’s specialist (I looked him up!), but I don’t think he has a scooby about anything else.
Take care
Paula
Oh no 
im sorry to hear that, it’s stressful enough going through this! I also went from so angry to just so worn out with all and accepted just to sit down and whatever will be will be but then when drs refuse to help with any symptoms because there is nothing wrong it made me fight back to keep what good bits I possibly can. I had to leave my nhs job because of this so I took the frustration out on making myself heard and refusing to give up and although still not much further I no longer have the bad attitude and have the we are sorry attitude!
I’m sorry mark for what you’re going through, if only they could spend a day in our bodies they would be jumping to help.mi have also been through the you’re stressed or depressed and it makes me so mad because yes I am stressed, why because as a Dr you won’t help and tell me and I’m depressed living with this rubbish! It makes me wish I’d trained as a gp to have a little compassion and belief in people!