How frustrating that you got Covid-like symptoms and had to cancel the physio session. And yes, it makes sense for those tests to be done first before the consultation, but I’ve had exactly the same. I don’t understand it. It just adds on months to years of delay.
Oh, for a nice easy-to-diagnose condition! Preferably one that is treatable too!
Limbo is just such a horrible place to be, and the fact that the NHS is so overstretched with huge delay and lack of communication at every stage, it is simply soul destroying. Extra uncertainty which is completely unnecessary, on top of the uncertainty of no diagnosis. It just ramps up anxiety. Basically the NHS is failing many people, and adding to their ill-health, rather than treating it.
I tried to get something as simple as physiotherapy on the NHS for my deteriorating knees - muscle weakness and fatigue had put a load of extra strain on my aging knees. The physiotherapist just diagnosed by telephone, sent out a pamphlet of generic physio exercises for knees, with no structure or grading to them and not designed for people with neurological muscle weakness and fatiguability. (Even said repeat until you can’t do any more, then repeat again 3 times!) When the exercises made things worse, she wouldn’t help make a more personalised plan, and wouldn’t even see me face to face for over 3 months. I switched to another NHS physiotherapist, who just sent me off for x-rays, and again wasn’t interested in trying to select more appropriate exercises or exercise plan. I was paying to see an osteopath privately, who was fairly sure I had both osteoarthritis and torn menisci. Based on that knowledge I went online and eventually found a good structured exercise program. So simple - just has an exercise for each relevant muscle, so not overworking of some muscles or overloading the knee, and I now know exactly which muscles are problematic, and how quickly they fatigue, and can now gauge if the exercises are having a good or bad or any effect. And discovered which my weakest muscles are, (you’d have thought the physio would have wanted to ascertain that) and discovered that strength of them is essential for healthy knees, yet they weren’t included in the generic NHS knee exercises! Just hopeless.
Anyway the knee x-rays came back showing severe osteoarthritis. Had a 5 minute telephone consultation with the physiotherapist who basically said I could be referred to a surgeon (4 month wait for initial consultation) for total knee replacements (goodness knows what wait for that), or have some injections (which are known to be not effective, or actually degrade cartilage), or do nothing. I asked about knee braces (the type of OA I’ve got is amenable to knee braces - thank goodness for google!) and he was dismissive. I said I was going to continue with the exercises, and he just wasn’t interested. I’ve found out that knee braces can be prescribed on the NHS (I rang the company) so am going to tackle the GP at the practice who is also a trained osteopath to see if I can get those. I suspect that I’ll have to buy them myself, though. £600 for each knee.
Sorry for my rant! I do know where you are coming from, so can really empathise. How much bashing one’s head against a brick wall can we take before we give up … I’m actually about to walk away from any further neurology consulations. I’ve had enough. They haven’t even told me if there is going to be any follow up, or not. I’m just going to let it lie, and see if they ever bother to contact me again.