Last weeks neuro appointment.

I wish I could tell you I had the guts to show my neurologist what I wrote in my last post, but unfortunately I chickened out and didn’t, which I’m annoyed about. I really want to send them what I wrote but I’m not sure I have the courage to do that either.

I felt physically sick with nerves before my appointment, though I do feel sick quite a lot now so maybe it was a combination of the nerves and the other problem that causes me to feel sick. My nerves were calmed by having a lovely chat with a woman in the waiting room which is like a room where people go in for day infusions, and she was getting one for her MS. She was really nice and talking to her helped me feel slightly more calm and was a bit of a distraction.
I saw my nurse first and there was so much I wanted to say but like always words failed me and the best I could come up with which kind of got straight to the point anyway was something along the lines of ‘I’m so fed up I want you to remove the stimulator.’ After a bit of a discussion with her I then waited till my neurologist could see me.
I saw my neurologist after a short while and to cut a long story short we decided to keep the stimulator turned off for 3 months, to get my pain levels back down to baseline before stimulator. At which point I will see him again where it will be discussed what to do next, maybe another small stimulation attempt which I’m really not keen on, or the only infusion I haven’t had. To be honest I just want removal, I want this nightmare over, and the last thing I want is for them to turn it back on and send me back into even more agony. But I don’t want them to think that I’m not trying, that this was all for nothing, that I’ve wasted their time and resources.
We then discussed my histamine intolerance issue and the medications he put me on the last time I saw him which really really helped for a couple of weeks, and then some of my symptoms started returning, and now I have hardly been able to eat in probably over 3 weeks now. He wants me to up some of my medications and see this Professor for this type of issue at a different hospital in London, so I’m going to be sorting that out as well. I’m really struggling with being unable to eat, and I feel incredibly unwell.

He asked me how I was doing, and I wish I had been able to go into some more detail than I did but I felt if I said more than I did I was going to have a massive breakdown and there were a lot of people in the room I really didn’t want everyone to see me like that. So I just said ‘no not good at all’. He asked me if I was still seeing my psych who is practically on my neuros headache team and I told him he had discharged me a few weeks ago because I reached the maximum amount of sessions he could offer me. My neuro said he would see if he could sort something out, I really hope he can. I wish I had been able to tell him how much I really am struggling, or even just have shown him my previous post, but me being the idiot I am was unable to do any of that, so he doesn’t really know how much I need some help. And as usual I hide everything with a smile, a laugh or some sarcastic comment so nobody knows just how badly I feel or how much pain I’m in.