After first becoming ill, how many days in t... - Vasculitis UK
After first becoming ill, how many days in total were you hospitalised before your final diagnosis? please leave any appropriate comments
John_MillsVolunteer131 VotersPlease select one:
I had many many tests and nothing could be found.
It was only when i mentioned by chance "I don't know if this is of any relevance but i had another nosebleed" I had never mentioned the first one.
I remember the Dr saying "Do you know what that is of more relevance than you realise"
A trip to ENT confirmed what i later found out to be nasal crusting and Wegener's was diagnosed.
The diagnosis though isn't very specific : non anca associated vasculitis. From the clinic icon they suspect GPA or EGPA.
I was constantly being ill and all my body became swollen and still drs didn't do anything, saw a kidney specialist one Friday and he said it wasn't my kidneys but would send me for full blood test, at this point I was in a wheelchair not being able to walk due to purple legs and black feet, Monday came got call from kidney specialist to tell me my kidneys had failed and to go to hospital, where I was in a and e for 4 hours before getting a bed on a ward, then sent to Leicester hospital cos my hospital didn't have the facilities to deal with me, had a blood transfusion which saved my life on their high dependency unit, and a few days later I was told I had wegeners
I was diagnosed within an hour of being admitted to A and E at Hinchingbrooke hospital in Huntingdon, and was sent to Addenbrookes the next morning as at the time they were running a medical trial. Can't fault the hospitals diagnosis I experienced, maybe only the GP's I had visited prior to this!
I had problems which were diagnosed as 'an allergy to our cat', gout, you work too hard and 'it's your age! It took over to years before is co lapsed and was admitted to A&E.
In hospital 14 days total, had kidney biopsy on 2nd day - doctors waiting for results which were sent by post and result to come by post! ! Meanwhile, kidneys were failing and CRP sky high so consultant told me he felt sure it was MPA so began to pump me full of Preds and Cyclophosphamide- high doses. After 6 days the result came and the consultant was correct. A few more days and allowed home.
In hospital for nearly 2 weeks after being sent to A & E by my GP. Loads of tests done and diagnosed after discharge when I had a PET scan at John Radcliffe, Oxford as an outpatient.
One day for biopsy. Day surgery, no overnight stay.
They knew my diagnosis on admission but renal biopsy confirmed. But to get to that stage via GP was almost 17 months......
Not initially hospitalized, but booked immediately for a revascularization of my leg as the femoral artery was occluded and by that time I was in a wheelchair and couldn't walk on the leg.
This 3 months is a culmulative over 4 years. Final diagnosis at routine Rheumatoid clinic given by newly qualified doctor.
Dean was in hospital a month before they found out he had a blood disorder, he was diagnosed with Hypereosinophilla syndrome, then 18 months later CSS was first suggested. 3months before being addmited to hospital he had a heart attack at the time they couldn't find any reason why he had had a heart attack, he was only 21.
Started getting symptoms in 2008, carried on until 2012 when I was sent by GP to rheumatology. They diagnosed Rheumatoid arthritis. Developed leg ulcers, hospitalised and subsequent biopsy identified systemic Rheumatoid vasculitis. Other tests identified Myocarditis and mono-neuritis multiplex. Taken three years to now to reach remission. Still on MMF but Preds reduced to absolute minimum.
I was lucky my GP suspected Wegeners from pretty much the get go. I did experience "some" misdiagnosis from some out of hours consultants & DRS and even a couple of GPS (E.g Impetigo, Staphylococcus, Meningitis (only briefly) and a few other things.) But all in all, i had diagnosis within 3 months. Spent 2.5 weeks in hospital in total
but took 21 months of getting worse to go in for a throat bi-opsy.
hour long , heavy, clotted nose-bleeds; nasal crusting; had been dismissed as rhinitis.
chronic hoarseness - same
total loss of voice; inability to swallow - "maybe we'll ask for a biopsy, poss. throat cancer."
chronic fatigue; unable to keep even water down; so dehydrated, couldn't put anti-sickness tablet inside lip; grey - "Let's get you in for tests..."
Was in hospital for 4 days, that was 2 yrs ago now.
It's only recently that I have received a tentative diagnosis of Behcets.
Admitted to hospital following kidney biopsy after reduction in kidney function over a few months, and ANCA test result was positive (requested by GP). Diagnosed and started i'v steroids the day of admission.
I was taken into hospital and diagnosed on the first day but spent a further 7 days having treatment
In response to the question the answer was Never as I was diagnosed within 5 minutes of seeing my rheumatologist. However, I was then hospitalised for 5 days whilst they stabilised me!
Within 3 days of being admitted and after one kidney biopsy, loads of tests, plasma exchanges and more tests I was diagnosed with AAV/WG.
Jacqui 
It took months before I fibnally got referred to a rhumatologist who finally diagnosed me with systemic small vessell vasculitus, but when my flare went and I went in to remission my doctors deny I ever had it, I have had many blood tests since but my doctors dont do the right test, it has to be an ANCA test, they just do an ordinary blood count then tell me theres nothing wrong, since my first severe flare I have had difficulties breathing and my energy has always been very low, I get told I have COPD then they tell me I have Heart Failure, yet no one, only one doctor at Papworth last month has begun to recognise my Vasculitus, I am better some days than others and when on steroids I feel so good it restores me back to normality, not enough doctors recognise this condition, I had to sit and cry in my doctors room before he sent me to the rhumatologist and looked into it, I feel my attack which was very severe has scarred my lungs, I am being sent for a CT scan end of the month so see whats going on, the doctor at Papworth who recognises my vasculitus has ordered this, I would say it has taken 5 whole years for anyone to listen to me
Last March I was admitted to the hospital with a blood clot in my right arm. While doing routine tests, they discovered that my sed rate was 91 (normal is less than 30), and that I have 2 copies of the MTHFR C677T mutation (can't metabolize folic acid nornally). They then did a biopsy of the artery in that arm and diagnosed me with unspecified vasculitis, and sent me to a rheumatoligist. This was all done in about 2 weeks time.
Dear John/all,
Trust me to be awkward! But I collapsed, was taken to UCH (London) and, very thankfully, diagnosed and treated. The rest, as they say, is history. I'm told that a passing Professor recognised my symptoms. So I was saved by two complete strangers- the one who took me to hospital and the Professor, who I don't think I've met.
This, is has to be said, is typical me-never, ever, ever, ever did things as I was supposed to! Before anyone askes I'm NOT stubborn, 'bloody minded' (so long as I get what I want) or pig headed-so just don't argue OK! Seriously though this really is my story, quite amazing really. I was also only given a few months to live-eighteen years ago. I had a Kidney Transplant, in July 2013, and am, so far anyway, doing well-my next appointment is on Tuesday-I'll keep you all posted.
I'll be interested to see these results scientifically correlated, if this is possible. In the mean time take care everyone-stay 'healthy'.
Best wishes AndrewT
Admitted to hospital with a suspected bleed on the brain after suffereing severe headaches for a long, long time - Had MRI and other tests - pumped full of steroids and antibiotics and discharged after a few days. Backwards and forwards to GP over next month as things got worse - getting very confused - sent to A&E to see a neurologist where they told my family I had brain damage - transferred to a specialist neuro hospital where I spent 2months undergoing loads of tests - MRI's, CT Scans, couple of lumber punctures etc. Luckily I dont remember all of this. Eventually had a brain biopsy and cerebral vasculitis was diagnosed and then treatment started.
I was keep on going to the A&E after losing complete use of left hand and right leg among other symptoms like severe chest and stomach pain, vomiting, diarrhoea, dehydration, losing 8 kgs weight in 2 weeks without trying to lose weight. A&E Doctors refused to hear about my pain and lost feeling in my hand and leg. It was in Aug 2014, when I was seen by a newly qualified doctor at 1:30 am, who showed interest in listening to my symptoms, especially related my hand and leg. This Japanese doctor spend around an hour to listen to me and examine/test my hand and leg. She diagnosed me, although I was told about my condition by a consultant two days later as it was a weekend when she diagnosed me. My treatment started 10 days from this, after my ANCA result was confirmed.
Put down 1-7 days, but this seemed the best approximation. In fact I'd been backwards and forwards to the doctor for more than three years with a host of strange symptoms that were never linked together. When I finally collapsed completely it took four red light dashes to A and E before a vascular surgeon diagnosed me, and admitted me. The next five days were a blur of different tests while they confirmed the initial diagnosis. Then I was referred to a rheumatologist who started me on a high dose of steroids, then added methotrexate a month later.
After many, many tests on my bowels, stomach, arteries as well as a lumbar puncture and xrays and consultations with other doctors, a neurologist was consulted and after a muscle biopsy they had the diagnosis!!
I had a breast abcess went into have it drained should have been an overnight stay but stayed for a week . While in there I complaint i had sinusitis but just gave be ibuprofen ,I stayed for 1 week. Came home and my GP prescribed antibiotics for the sinusitis. Went back to hospital to have wound checked was seen by a wonderful Locum who admitted me again as he could see I wasn't well and referred be to a general surgeon who was fantastic . He did all sort of test between 2 hospitals but after 4 weeks still no diagnosis , he sent me home as I was desperate to go but he did refer me to a rheumatologist and I was waiting for an appointment. My GP came to see me at home and he rang his friend a rheumatologist who suggested some blood test and started me on 50mg of steroids was seen by him 2 days later who told me I had GPA but wanted me to be see Professor Bruce in Manchester he also confirmed GPA . That was back in 2012 I'm still see both consultants and my steroids are now down to 1mg in a view to stop in the next 2 months .
I was being treated by a, so called, "specialist" who was giving me the wrong drugs. I asked for a second opinion, much against his will he referred me to another doctor. So glad that he did, as the new doctor made the correct diagnosis and basically saved my life. As at the time of his diagnosis he told me that left with the 'treatment' (?) that I was having, I had 18 months left to live.
Now, eight years further on, I am in the main under control. Although just coming out of a massive flare which has really knocked me for six !! Legs, ankles (and other parts) very swollen and painful. Hands so swollen and painful I could not feed myself or even put my hands under running water !
I could barely walk or dress myself pains in legs and shoulders - my own doctor put me on painkillers - eventually took myself off to hospital as I knew something was wrong.....there for 4 nights with extreme night sweats etc they did lots of tests and put it down to a virus..... 5 months later I went to a rheumatologist with very high inflammation rate and was diagnosed with PMR and treated with steroids - after losing nearly three stone , nausea, night sweats I had a PETSCAN with new doctor and told I had Vasculitis GCA and treated immediately with cyclophosphamide and steroids.
Was treated by GP with 3 lots of antibiotics for sinusitis. Finally sent straight to hospital from GP surgery in ambulance suspected pneumonia. In hospital 5 days during which they discovered my blood count was VERY low & gave me transfusion. Sent home to await endoscopy/colonoscopy to establish cause of low blood count. A week later all my joints 'seized up' & I couldn't move without extreme pain. GP came to see me when sudden rash developed. Knew something was wrong but not what. Told to go to A&E if it got worse, which it did. Within 1 hour at A&E a rheumatologist diagnosed vasculitis. Took a biopsy later & diagnosed Wegeners.
Only for day surgery forbiopsies
