Three years

[eyeBRing]

I was misdiagnosed with PMR for years. It was eventually diagnosed as vasculitis and it's attacked my kidney. I am not suitable for dialysis and my prognosis is 6 months to live. My egfr is5 and I am Asymptomatic at the moment. IAM angry it took so long to get a proper diagnosis.

[DorsetLady]

Sorry to hear this but we did mention 2 years ago on the the PMRGCAuk forum that we thought your “PMR “ might have been GCA. Obviously that wasn’t investigated sufficiently by your doctors…

[eyeBRing in reply to DorsetLady]

I have anca vasculitis.

[DorsetLady in reply to eyeBRing]

Okay, thanks for update… best wishes.

[SusanEleven]

I was misdiagnosed with PMR for 6 years. I also have ANCA Vasculitis, GPA, formerly called Wegener's. My (then) doctor essentially disregarded my +ANCA tests. The doctor who finally diagnosed me last year said that PMR and GPA present in a similar way in the beginning. My lungs were attacked. I have no kidney involvement.

I'm being treated with rituximab infusions. Do you have a doctor experienced in anca vasculitis? It's not uncommon to have a delayed diagnosis. I know that's little comfort. (I'm in the US. I had to go to a teaching hospital to get someone who connected the dots.)

[eyeBRing in reply to SusanEleven]

I have had rituximab but my kidney has not responded. I was born with one kidney and it's too late too much damage. I am not a candidate for dialysis and my wife is 5. Good luck with the treatment.

[eyeBRing in reply to SusanEleven]

Sorry should have said my egfr is 5%.

[Hoofprints]

I am so sorry that you have been mistreated and misdiagnosed. What a shock- no wonder you are angry. I hope that you are now getting all the support you need, whatever form that takes.

I understand you were born with one kidney, but don't understand why you are not a candidate for dialysis. Is this based on a medical rationale? Or is this something to do with some cost -benefits ratio analysis by the NHS?

If the latter, then I would challenge it if you have the strength/support of others to do so. It sounds like the drs have been negligent on the face of things and you have a potential case in clinical negligence (not that that would help you directly, but maybe as leverage to fight for access to dialysis if there's no convincing reason why you shouldn't have it).

I am so sorry. I hope you have good support and love around you and can find something beautiful and meaningful in each day. You are not alone - this forum is full of good people who care and who don't judge - lean on us whenever you need to.

(And if you need the contact details of clinical negligence solicitors private message me)

[eyeBRing in reply to Hoofprints]

Thanks for reply. I have too many other medical problems so can't cope bodily with dialysis the consultant who diagnosed anca said if it had been diagnosed 2 years ago I would have been cured.

[Hoofprints in reply to eyeBRing]

I am so sorry. Words fail me and my heart goes out to you. You must feel so angry and frustrated and heartbroken. Do you have support from friends, family and palliative care? I hope so, and I also hope you can reach out to them and stay as symptom free as possible so that you can have the best quality time possible. I mean for you to have the best mental health as possible too in these awful circumstances so that you can enjoy the time left.

It's frightening to be given a date. I remember my mum with cancer - she made 9 months, not the predicted 6, so please don't think the dates are set in stone. She was wrongly diagnosed at 62. Her lung cancer was repeatedly dismissed as a trifling cough and she was given repeated antibiotics until I switched her G.P. to a competent one who had her correctly diagnosed within 2 weeks. I was so so angry with the incompetent GP. My mum somehow found her peace.

The only positive (not the right word, but I can't think of a better one-sorry) in knowing she had limited time was that we made the most of every minute with her. She had excellent palliative care and was pain free and at peace.

The founders of the Lauren Currie Twighlight foundation lost their daughter through similar misdiagnosis. They are always happy to talk to vasculitis sufferers and I mention it as a possible place you can offload and get empathy and support.

thelaurencurrietwilightfoun...

I wish I had a magic wand for you . I don't, but we're always here on the forum to listen. 💐

[Red-head44]

I am SO SORRY to hear your news. You are quite right to be angry. You say you have one kidney - I was born with a horseshoe kidney. You don’t mention any extended family - please let yourself lean on them if available and please stay on here and vent anytime you need to. There is lots of people linked here who have lost family who will know what you will be going through and we may be able to offer some crumbs of support. Absolutely put yourself first going forward and all the best. Xxxxxx