I must say I share your frustration.
The hospital, Charing Cross, I have been going to for 8 years on tysabri and have recently had issues with the MS hug! When I emailed/rang to tell them and was asked what I wanted them to do. This was a brand new symptom which was excruciatingly painful and made me struggle for breath. I was fobbed off essentially. I had the same experience when I went to A&E - once any heart attack/stroke/embolism had been ruled out, I was sent packing without so much as a discharge note - despite having pain on breathing.
Essentially - I’m guessing it’s the MS Hug - no one has told me that’s what it is, no one has advised me what do to or offered any form of treatment.
Charing Cross seem so overworked (and some are downright incompetent) that i struggle to get meetings with the consultant, feel nothing is ever relayed to the consultant, MRI’s are left to the patients to remind staff to book them and then good luck getting the results (of that or the JC virus indexing - I’m positive). The lack of support is terrifying to be honest.
The whole experience has left me so frustrated and as though there is no where to turn! My community MS nurse is lovely but essentially advised physio and going back to the GP repeatedly until I had a resolution. The issue there being that the GP doesn’t like treating the MS as that’s what Charing Cross are for.
Sorry for rabbiting on but just wanted you to know you are not alone in your frustration