Further update on tapering problems

[Paul76]

Following on from last last post I decided to go private again to see Dr Bala at the Nuffield. Saw him a couple of days ago and he was quite concerned for two reasons. He thought there could be a possibility that I had become pred resistant. Seemingly this happens to a small number of patients. Also he thought I may have Vasculitis. He wanted to take me on as an NHS patient but unfortunately I don’t live in the same area as his hospital. I did mention that, in the last year, I had had an X-ray, a MRI scan and been to physio to try to rule out anything else. He said he would make a referral to my GP which, unfortunately, would include lots of tests and possible scans but he would also double check my MRI scan. Early next morning he phoned me to say that he had checked the MRI and I had a couple of bulging discs which were pressing on the nerves at the bottom of my spine. I had never been told this. When I had the MRI it was classed as an emergency as they suspected cauda equine syndrome. All the hospital consultant told me was that everything was fine and should settle down. Obviously they did not see the bulging dicsc or presumed I knew about them. Absolutely gobsmacked! Dr Bawa will write to GP advising an orthopaedic referral and he told me to get an urgent GP appointment for stronger pain killers. The GP was stunned when I told her and kept apologising but I told her she had nothing to apologise for and that it was a mistake at the hospital. She has prescribed paracetamol and tramadol four times a day. This is only the second day and the pain has reduced by about 50%. The relief is incredible. If this carries on I’ll be able to start gentle walks and hopefully get rid of the walking stick. In the meantime I’ve to try to reduce the pred by 1mg every 4-6weeks. Sorry for long tome and have to say that, as usual, PMRpro was right when she said that something else was going on. Once again many many thanks for all the help and support from this forum. I really don’t know where I would be without it.

[DorsetLady PMRGCAuk volunteer]

Glad to hear you’ve got some answers, and more importantly some relief…

[Sophiestree]

Did he say why you could not go on his NHS list? I moved consultants to an NHS one and hour away from me. I didn't think distance came into where you could go. I got my GP to write the referral. It took a while but it definitely worked. He sounds thorough at least.

[Paul76 in reply to Sophiestree]

We are automatically referred to a certain hospital in the first instance but, if necessary, I would have fought it. Hopefully the way ahead is positive.

[PMRpro Ambassador in reply to Sophiestree]

It used to be you could choose where you were referred at the outset - in England at least - but you have to think of that before the GP starts the process.

With the pressures on the NHS, many hospitals now refuse to take referrals from out of area without a VERY good reason - they have enough local referrals to have long lists, taking the remoter ones off helps them, if it doesn't help you! Especially when it is a particularly good department for your problem or you have had a good experience with a private doctor who, before Covid, would have happily added you to their NHS list. And sometimes the triage is a purely admin process, never gets to the department, never mind the doctor.

[Sophiestree in reply to PMRpro]

Clearly things change so quickly as this was only 18 months ago for me at the most. I was lucky obviously

[PMRpro Ambassador]

Oh heck - I do hate being right so often!! I really do.

But what is concerning is that if HE could see bulging discs impinging nerves - why did whoever read the MRI scan not flag it as THAT is actually what they are looking for in cauda equina. I think that needs a complaint to they investigate - you have to complain to get it looked at so whoever messed up is retrained if necessary. Not paying attention can end up with very serious consequences. Or they reported the wrong scan, same thing.

What on earth do they mean by "pred resistant"? In my book it may be something other than that.

Never apologise for a long post - better that than half a story!

And now, I hope things will improve.

[tangocharlie]

I'm now firmly of the opinion that if someone has chronic and debilitating back pain there is highly likely 'something else going on'. Backs are probably one of the most common things people go to their doctor about, yet we're just fobbed off and told it's 'muscular' and at best given pain killers and exercises to do. I went to A&E to be investigated for cauda equina at one point as the pain was so bad and I was unable to walk or lie down, yet wasn't even given x-rays despite being in excruciating pain. Turned out to be spinal fractures but it took another 8 months to get that diagnosis. Another opportunity missed to detect them. And I agree there is no such thing as 'steroid dependency', where do they get that nonsense from rather than seeing if something is wrong? Sounds like an excellent consultant though, I'd move house to be under his care if I were you 😀