Posted in here a few times, but I’m now completely stuck as to where to go next
Was referred by Rheumatology for a Nerve Conduction Study, which I appear to have passed without a problem and no nerve damage can be found in feet, legs, amrs and hands.
This is is despite still having numb, tingly, burning feet, a shake in my hands when trying to do something (just watch me pour a bottle of water into a glass!) and the inability to walk as I used to - throwing /trying to swing my left leg forwards if that makes sense.
Do I just start again and go back to the GP and re-explain all the symptoms again as it doesn’t look like my arthritis has flared up, but things aren’t getting any better or easier.
It’s almost as if the line of investigation from Rhuematology has come to an end and there’s just the shrugging of shoulders all round with no one to point me in the rigth direction.
Sorry for the moan - I’m just at a loss as to where to go next as I’m almost at the stage of thinking I should just write the symptoms down on a card and get it laminated to had over everytime I get an appointment.
I’ve just had a look back to your previous post. It looks like you never actually saw a neurologist, but got triaged straight through to having the nerve conduction tests, based on the notes that they were sent. Has the neurology team said no further action required?
I think you need to talk to your GP to see where you go next. Whether they think you should be seen in person by a neurologist, now those tests have been done. This triaging business seems to be fairly recent and it is a way to reduce the number of unnecessary consultations with neurologists as we are seriously short of neurologists in the UK, and now with covid on top, pressure is even greater to weed out patients, and send them back to the GP without properly investigating. However, in cases that are not clear cut, I suspect people are falling through the gap between different specialisms, especially where they may be neurological involvement, and not followed up, and that may be what is / will happen in your case.
I’d also be tempted to extract all your notes from the hospital so you’ve got a record of what has been done and said. You can apply for them.
Yes, Ziola, that’s correct -I went from Rheumatology, to being referred to a neurologist which was then passed directly to the Nerve conduction study, despite my GP originally stating that he’d like me to see a Neurologist.
I’m now being cynical and expecting rheumatology to say there’s nothing that can be done as their main concern was nerve damage from the arthritis drugs I was given. They were stopped as soon as the tingling, buzzing started in my feet.
I’m going to try with the GP again - when I mentioned to the GP that I’d been sent straight for the Nervce Conduction study, I was told that it would reveal a lot…obviously hasn’t so I’m guessing I’ll have to be a bit more foreceful.
That is an excellent idea. I always keep notes and send them to my doctors before the appointment. Depending on the communication methods you have available, a written list that you can hand to your medical professionals should be helpful in your care. Good luck and I hope you do well with your digonoses.
