I’ve been seeing an OT since June last year. I think we’ve gone as far as we can now. She’s a bit baffled over why I’m still in so much discomfort with my shoulder and neck after all the work we’ve done and also the fact that things like massage and hands on work with the arm actually make it worse. She’s been speaking about FND overlaying the stroke symptoms, convinced this is the problem but after reading about it, I told her I couldn’t relate to it at all. She initially didn’t want me to see a neurologist, saying she was afraid I’ll be written off because I’ve had a stroke and that I deserved more than that, especially as she’s seen lots of improvements. But when she started focusing on FND, she changed her mind. So I got on the waiting list - 8mth wait in my post code - told my GP I can’t wait that long, and had my first appointment recently. The most disturbing aspect was my BP which was sky high. I was seen immediately despite being 15 mins early and I told the nurse it would be high because it had been an effort to walk to the clinic and here she was taking my BP without me even having a chance to catch my breath!! Then the doc thought I was there for something completely different. Fortunately, I’d gone well prepared with diagrams and clear information but the young man didn’t know what to do with it and had to go find the consultant to help. Although she was very nice (the consultant), she went into a diatribe about what had happened to me, all stuff that I am already very aware of. She finished by saying my symptoms are residual from the stroke , should improve in time and to keep doing what I’m doing. And that it’s definitely not FND! She’s booking me in for a CT scan just to check there’s nothing else going on, as in, have I had another stroke? Oh, and the usual pushing of statins that I always refuse because I don’t need them - my lipid panel is really, really good - but they’re obsessed! And when I got home, my GP rang to discuss some things I could do while I was waiting for a neurology appointment to become available. So no-one knows what’s going on because communication is so poor. It was actually all very stressful so I was whacked out and had to rest for the remainder of the day. Needless to say, the appointment was a waste of time. I was hoping to be offered an MRI of the shoulder and neck area, mostly to see if there’s any nerve compression, and although an MRI was mentioned, I said it would need to be an open one as I’m claustrophobic. It was then she decided on a CT scan (cheaper, of course). I was going to decline but decided I need to stay engaged with neurology, just in case I can persuade them I might need their services.
Anyway. I still believe the shoulder and neck pain can be fixed. The numbness in my arm and side is abysmal, pins and needles constant, but touch is equal to the opposite side. The arm and hand are pretty much fully functional although I can see that some movements aren’t quite right. I’m now thinking I will try a chiropractor for the shoulder and neck pain, some of which I’m convinced is down to posture (and possibly tight fascia). Has anyone had any good results with a chiropractor ?
One thing I absolutely hate about having had a stroke is that I seem to be totally self absorbed much of the time, trying to find solutions to the problems 
Trace
And actually, the neurologist mentioned that the position of my arm wasn’t helping - she suggested resting it on a pillow when I’m sitting down and since I’ve been doing that, I’ve noticed the arm stays in a relaxed position instead of raising up by the elbow so my hand is just below the side of my face. I’m aware that some of what’s going on is neurological but an MRI could either confirm or rule out if anything else is going on. Thanks for your response 
There’s lots for me to catch up with!
