What I find distressing, is that no one seems to understand what you have, and all I get is “it’s all in the head”.
I find it even more strange that they have never done an MRI scan, as MS runs in my family. Some of the people have been really rude, and funny if you give it back to them, they don’t like it.
I have also started complaints with PALS, and waiting to see a specialist in middlesborough. Even with all the symtoms that you have put on your website, I seem to have twice as many .
I don’t have faith in the NHS anymore, as the departments don’t seem to talk to each other, there attitude seems to be have you come for a sympathy vote. They place us well down the pecking order, or if you have anything, they are like “there’s nothing I can do” !!!.
I agree to a point, I was treated by a Movement Disorder Specialist / Neurology Consultant in Leeds and honestly he was great.
When I moved across to Manchester, I have to be honest I wasn’t very happy with how I was treated. Though my new Neurology Consultant knew his stuff, (he specialised in Dystonia and Parkinson’s as far as I recall)but he really had no bedside manner. Very brisk, to the point, wanted you in and out in a flash as he had so many patients waiting in the waiting area. He actually said that to me at one appointment!!! So I wrote him an email, sent through his secretary. I went through our conversation, where he wouldn’t let me ask things, stopped me mid sentence, etc. I got a very apologetic reply, but it didn’t take away that I had no faith in him anymore, because he wasn’t listening to my problems, he was thinking of the patients in the waiting area!!!
After he had done tests, that of course show little to nothing. After he had referred me for my Botox injections, to be seen by a neuropsychologist and seen for my sleep disorder, that was it he didn’t want to see me anymore. No follow ups, as he had done as much as he believed he could do.
This is the fault in the system! We get left to cope. It doesn’t matter that we are seen by other therapists, we still feel the need to see a neurology consultant to make sure that we haven’t progressed into MS, or Parkinson’s just a couple of examples. We should be checked, and if it is still just functional then okay. BUT I still want to be checked again next year