This morning I felt positive, slept really well last night too, first time in a long time, I also managed to eat all of my breakfast without a fuss. Pain felt at bay & I just felt good & enjoyed a surprise visit from both of my aunties.
I went to see my GP for a review, & I was told my rheumatology appointment that's was due for 6 weeks is now 10 weeks away. Still no letter for biopsies. I started crying. I couldn't help it, I was also told that I'm no longer allowed any pain medication, until I've seen the rheum. 😞 my depo injection was due Friday but as it was easter I phoned yesterday & they cannot fit me in until 3 weeks, which will cause some unwanted side effects & I asked today if the doctor could do it & she said no. She didn't have the time & I'll have to wait. My partner & I were pregnant last May. Unfortunately we lost our baby due to my health so that Is why I started the depo injection, & it doesn't help with the way I am feeling, I just feel lost now.
This doctor didn't seem concerned I asked for a referral elsewhere to see some who knows the importance of biopsies & diagnostic tests for GPA but I was told to be patient & wait...
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LauraMk30
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Did you ask the GP to document your request in your notes and give you the reasons for refusing a specialist referral in writing?
It might be an idea to print off a copy of the BSR clinical guidelines for ANCA associated Vasculitis as well to show them and illustrate that your care isn't evidence based.
Anything I seem to ask for is denied straight away, The Doctor I had seen was the first one who denied referral to the rheumatologist. & said there wasn't anything wrong , I showed him the BSR copy & he said " what do you want me to do with this" I have another appointment on Friday with a lady doctor who has helped me so far & going in with my dad. So hopefully my dad will get the ball rolling again.
It has happened to me to need to see a GP 3 times while in France over the past few years. They were all educated about Vasculitis and all familiar with my medications. Better than that, they were empathetic, listened to me and dealt accordingly. One told me that my GP's response (that he only knows three things about Vasculitis, it is rare, complicated and he does not have time for it), would be an offence in France.
In England, I was treated as a malingerer for 9 years without a diagnosis. It was suggested that all these symptoms were in my mind (rash? episcleritis? arrhythmia?) and I should accept psychiatric advice. Eventually I decided to go privately to a specialist for each problem. Expensive but oh so worth it. It took me just 3 months to get a firm diagnosis of my atrial fibrillation and vasculitis and request my GP to refer me to the specialist clinic at Addenbrookes.
I don't know what is wrong, there are so many letters on this site of very sick people disregarded and undiagnosed. Of course not all, but too many. Perhaps we do not complain enough. I know I didn't for fear that I would be 'sacked'. Why do they not accept that we actually are ill?
Well said, amms! I spent 40 years being told at many different types of clinic & at gp surgeries that all my emergencies & multiple diagnosed conditions were "normal". Then finally the multisystem debilitation got so bad a brilliant rheumy figured me out....turns out I'd been living with a "lost" infant onset systemic lupus diagnosis, small cell vasculitis, Ehlers Danlos hypermobility & hypogammaglobulinaemia G, A, M all these decades
My NHS gp surgery has admitted that I'm too complex a patient for them to cope unless I do all my own patient advocacy & care coordination. Basically, I get the gp (usually the one who has followed my case most closely over the years) to phone me, then I tell her what I need doing. I can't get an appt with her for weeks & weeks.
I am lucky to have been able to get my gp to refer me to addenbrookes, which is in a neighbouring trust. I regularly attending several different clinics & vvvvv glad to be there. My impression is that I achieve these referrals because my many comorbidities & complexity make me a candidate for the sort of tertiary care that my local NHS hospitals can't quite provide. But, now I've been at addenbrookes for 6 years, the NHS seems to understand it's best if most of my care is from clinics there because they can share my records
Am vvvv much feeling for you Laura...and wishing you every best wish...you've got some great replies...courage
I was diagnosed at the age of 21 with benign hyper-mobility Syndrome, awful pain. My arms & elbows are back to front 🤡, my knees dislocate, shoulders, hips, toes. It's not all fun being flexible. It's hard work. Jeez to go undiagnosed for so many years is a heavy load to bare bless you.
It's really nice to know that your having the best care that you so rightfully deserve now & addenbrookes sounds like a godsend.
I too hope I can find a place where I belong,a good clinic with a good specialist. I'm in limbo. I'm to young to feel this old...
I absolutely am so so grateful for the lovely replies. I don't feel so lonely & on my own, it's very uplifting. X
Hi barnclown, I was just reading your interesting reply and wondered who your wonderful rheumy was, as I am still waiting to get a diagnosis of all my symptoms.
Gosh it's so awful to hear that you've been through it too. Out of curiosity did you live in France ? Or just there for treatment. Sorry I'm a little Slow today..
it's good to know they were educated there, empathy goes along way, it's fair far & in between nowadays. When I do get a good doctor it feels like winning the jack pot.. it's a shame all good things come to an end. Need more compassionate doctors who love there work & love to help.
That GP sounds Like mine.. 😞
What is a Malingerer? I feel as though some of the GPS I've seen assume it's all psychosomatic, my body is evidence that something is really wrong, & it's all visible on the outside & in.. how on earth can they say that... psychiatric advice... more like go back to med school. (Huff).. sorry..
Private is a good root when your left with no other choices. I had one episode of AF. I'm glad you got referred in the end. I've read some people's stories on here and they mention Addenbrookes.
I know it's awful, I'm really struggling at the moment. I thought I had made some progress, but it turns out I'm lost again, I dread I mean really dread going to see my gp now, & I always get that huff before I've opened my mouth to say hi, ☹️ I have complained once or twice. & going Private for my extensive bloods & getting quite a few positives back proved that I am ill.
I was made aware quite arrogantly that I was at low risk of blood clot.
I went 3 times, with symptoms in my left calf & was moaned at for wasting there time. Eventually a blood test was taken a d dimer.. hours later I was in hospital with a blood clot & 2 weeks after I had a suspected TIA.
It's horrible when no one believes you. & I get discarded like a piece of rubbish & pushed a side.
I wonder if my surgery have a personal Vendetta against me because none of them seem to have a positive approach or want to help me get better. X
I can sympathise whilst my diagnosis only took 3 years it was in the end down to the A+E department of our local hospital who on admitting me as an emergency after I went there as I could not stand the treatment I was getting at my GP's advised I was within 24 hours of death with a kidney function of 4%!
My GP never did any tests and just kept giving different pills.
I am lucky to have a great renal clinic who administer my care and they are constantly telling my GP surgery what to do as each time I go for a repeat prescription or nurse visit they have an issue.
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