Vasculitis UK

How long between first visiting your GP did it take you to be diagnosed with vasculitis. Please leave any appropriate comments.

204 voters
Lessthan 3months4 to 6months7monthsto one…Morethanone yearOtherplease…24%17.2%17.2%27.5%14.2%
AnswerVotes
Less than 3 months 49
4 to 6 months35
7 months to one year 29
More than one year 56
Other please state 35
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78 Replies
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10 years

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Never picked up by my GP despite being ill for a very long time. Only picked up when I broke my wrist and needed surgery. Orthopaedic surgeon found shadows on my lungs when I had a chest X-ray prior to my op.

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My doctor diagnosed and started pred on first appointment

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Nine years.

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Approx 6 weeks. However saw 3 GPs over 4 visits before last GP arranged hospital admission for investigation.

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3 years. Initially misdiagnosed with ME. Very very hard to get medics to reconsider as symptom pattern changed to look more like MS. Finally diagnosed with cerebral vasculitis.

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It took one visit to the GP, after this I was told always to go to A&E. The reason was the practice could not provide what I needed. Now, you will like this. Go to A&E out of hours. Guess who was the Registrar on duty most times. None other than my GP. I was very very unhappy. She knew my clinical background. We had a difference of opinion. If not for the Senior Partner, she would have removed me from the practice list. In the end, she has made it very clear to the CCG she will never again provide treatment for me. I am not with the same practice any more. But it would be very interesting what she would do if I turn up at A&E. Legally, if she sticks to what she has said. Could be "struck off" or loose the job.

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I was diagnosed by private hunting through different consultants. My GP had concluded the problem was psychiatric. After diagnosis I visited the senior partner at my GP practice having been advised to do so by my specialist after relapsing and being put on Cyclophosphamide, the GP's response was that vasculitis is rare, complicated and he didn't have time for it.

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I had to change my doctors 5 times before my present GP took a real interest and got me some help. I had been put down as drug seeking & also that all my symptoms were phantom due to depression & anxiety. If I was stronger then I would take this much further but, truth is, I am just not up to it.

I guess we are both lucky to still be here

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Go never diagnosed me. Lost the ability to walk overnight and was admitted to hospital where I got a diagnosis in 3 days. Was in and off steroids for asthema for 4 years prior to being admitted.

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At least 7 years. I was misdiagnosed and had two admissions to hospital before the one that actually diagnosed what was wrong. Saw numerous consultants too.

The year I was diagnosed I ended up at my GP surgery essentially every two weeks for 9-10 months.

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From August 2014 to June 2015. GP I saw as hand had gone numb referred me to neurologist who I saw one month later. Had electro tests, numerous blood tests, MRI scan, CT scan (fact my body blocked radioactive iodine gave definite clue) then nerve and M

muscle biopsies

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Saw a consultant because I had an extensive rash that Didn,t respond to normal creams , who decided to do a biopsy ,result came back inflammation, I questioned this result as the appointment for the biopsy ( and it was at that time a private consultation ) took so long to arrange that the original rash had gone. After I made the complaint that the biopsy needed to be done when my rash first appears a biopsy was done 2 days after my next rash appeared, this time, Vasculitis.

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Over two years, took at least two strokes before i was diagnosed with cns.

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GP asked fellow Doctor for advice, and said as far as they could tell, shown all the signs of form of vasculitis. Confirmed by hospital specialist within three weeks

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I think I was showing symptoms for about 2 years until I had a substantial flare. I went to the out of hours gp surgery where the GP spotted Vasculitis immediately. I had to wait 4 days while I was passed around different wards when they mri scanned me. I was then rushed to QE in Birmingham to begin treatment of Vasculitis.

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I had a persistent cough for 18 months that wouldn't go away and after a run I would have a coughing spasm. About 6 months before diagnosis I got Atrial Fibrillation and then hoarseness, intense muscle pain in my legs, even worse cough and a sensation of something in my chest that shouldn't be there. Chest X-ray normal but eventual CAT scan found lots of crud in chest. Diagnosis GPA.

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18 months to and fro doctors and they didn't diagnose me. Admitted myself to hospital and was diagnosed within a few hours.

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Diagnosed as hypothyroid about eight years before I was diagnosed with Large Vessel Vasculitis. Between then and the Vasculitis diagnosis I was told that I had GORD, dry eyes, frozen shoulders (and hips) and then fibromyalgia about two and a half years before I collapsed completely. Wonky blood pressure and no pulse had been dismissed as 'the machine isn't picking things up today'. Too many GPs seem to have lost the art of really looking at their patients?

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I was very lucky my consultant recognised cerebral vasculitis quickly but due to hospital red tape he wasn't allowed to start treating me for several months

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about 18 months, Only as I was at eye drs and she saw growths behind my eyes and then got rheumatologists to see me on a saturday am by 11:30 I was admitted and on cyclophose as I was told the Monday would be to late !

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Started having walking problems in 2009, GP referred me to Physio, Got an elastic band. 18 months later again referred to Physio, got another elastic band. Legs grew weaker, and in 2012 my work referred me to Occ. H. doctor who suspected Vasculitis. She sent report to my GP who then referred me to Rheumatologist. After the usual tests, confirmed Systemic Rheumatoid Vasculitis with Myocarditis and Mono-neuritis multiplex in 2013. So after 4 years and three elastic bands I was finally diagnosed.

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Diagnosed with GCA on first visit to gp and started immediately on pred. Was then seen by rheumatologist two days later.

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When I was finally discharged from hospital following acute renal failure, I was given the diagnosis of glomerular nephritis. It was only at an outpatient visit a few weeks later, and was enquiring re travel insurance, that I was told it was vasculitis. I was given no information of the disease and found out by research on the internet.

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It took around 2/1/2 to 3 years to diagnose me

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tested for asthma, eventually needed blood transfusion, then coughing up blood and admitted to hospital for tests.

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My PCP first diagnosed PMR, but when tapering off prednisone after 4 months new symptoms appeared. He then referred me to a rheumatologist who aggressively pursued a diagnosis, but MPA wasn't nailed down until I developed kidney problems 10 months after first seeing her.

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8 years

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Took 2 years to find out what was wrong with me! Severe back pain Dr. sent me for chest xray which showed shadows, followed by biopsy on lung. confirmed nodules not cancer! Still had pain through most all joints so was on high dose Ibuprofen, tramadol and butran patches for almost 2 years. Blood tests were being taken regularly by the rheumatologist without any comment. Then random blood test by my GP showed that creatinine level was showing kidney failure so immediately stopped all my meds! More pain so I paid to see a nephrologist who arranged a kidney biopsy, they found inflammation and confirmed Wegener's. Nearly lost my kidney's but after 2 years of right med they seem to be settled at the moment. Disgusted that there is no vasculitis specialist in my area only a rheumatologist who I visit every three weeks to check my symptoms and kidney function. And I am apparently the first one she has ever had to deal with!!

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18 mths ago and still waiting for a diagnoses, not sure Rheumy is any good.

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If you are not sure about him, get a second opinion. Your life could depend upon it !!

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I was sent to see a "specialist" privately who had no idea as to what was wrong with me, but was giving me drugs that actually made me worse !! After 18 months of this (and a hefty bill) I asked for a second opinion.

Eventually, after I made a fuss (probably did not want to lose the cash cow) he sent me to someone in London. Within 5 minutes he told me exactly what was wrong with me. I am sorry that I did not take that route to begin with !!

My condition is now reasonably stable, although it does flare and catch me unawares at times!!

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Hi I have read your comments and I am just interested who you saw in London, as I am still waiting to be diagnosed. Thank u suzy

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After two full weeks of headaches my Doctor started me on prendisone within hours of seeing me .

A biopsy confirmed TA.

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My Mum was unwell for several years,her Dr never even gave her a blood test. She had anemia which we now presume was due to the inflammation. Vasculitis causing organ failure followed.

Admission to hospital following numb hands, drop foot, treble vision, pneumonia, stroke and kidney failure, parked in a side room and told there was nothing they could do for her! She maintained herself for several days and I think they started to panic then, three weeks in intensive care, only when transferred to another hospital for dialysis did the nephroligist suspect vasculitis. Treatment went well, back home under original crap consultants who didn't monitor her well, white blood cells count so low she got pcp pneumonia which caused a heart attack requiring weeks in icu, two life support events and months recuperation. By the grace of God She is sat beside me now, slightly paralysed but well.

My advice is read up lots and keep asking what is being done.

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WG was not very well known about when i first got it thats why it took so long.

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I first went to go in April 2014 and still trying to get a diagnosis. My dictor won't refer me anywhere. I have spent s fortune on private referrals.

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My GP was great, took bloods really early and referred me appropriately. It has been Consultants that I had problems with. My illness was labelled " significantly psychological " but fortunately my GP disagreed and was prepared to refer me all over the UK for opinions.

Eventually I collected enough pieces of the jigsaw puzzle ( after racking up 1000's of miles and spending £1000's ) to get a diagnosis and treatment. Along the way I had to make an official complaint about my care as well.

The moral of the story is never give up and insist that you get a referral to a Consultant who has experience in Vasculitis, even if that means travelling.

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I started with flu like symptoms and i just got worse could not walk in the end very painful al over back and forth to Dr's until he sent me to hospital, spent a week in hospital lots of blood test scans xrays nerve tests muscle biopsy, i consider myself one of the lucky ones that i had a specialist already for my arthritis and he new about Vasculitis so all necessary tests were done very quickly. Although at the time it did not seem that quick, but it was in the scheme of things and reading other nightmare stories i am blessed and very thankful to Dr Price Forbes.

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As soon as he saw the ESR he sent me to my rheumatologist and I was started on prednisones immediatelY. All the testing came later and all was negative I was treated because of my symptoms and bloodwork. I am in the USA

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No ANCA test

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3ish years, I was treated for Chronic refractory urticaria but when I had exhausted all anti histamines and did respond positively to pred, I was sent for a biopsy which confirmed Leukocytoclastic vasculitis so for me HUV.

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Not diagnosed or noticed at GPs at all. I had nephritis in my kidneys so was being checked by the renal dept at hospital. After 12 months of the protein in my urine being over 520 I saw one consultant there who could not believe no-one had tested me for something else. Was booked in for a biopsy 2 weeks later and diagnosed 2 weeks after that. I asked them if I could have had this for a while and they said no otherwise I would be dead!

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Saw 2 different consultants then Neurologist who thought I had CNSV. He did some tests and sent a letter to see him but my mum was ill do it wasn't until 4 months later I contacted him and it was confirmed. Not his fault it took the extra time. I have been very lucky with all medics.

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More than four years 😓

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I went to emergency, was transported to hospital for a three week stay, released with "working diagnosis" but no treatment other than pain Meds, another trip to ER, a few more MRI's and diagnosis of Primary Central Nervous Sytem vasculitis at close to three month mark. Luckily I began treatment soon enough to survive really.

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I have CSS and suffered for 9 years. It first manifested as asthma only gaining relief when streroidS were prescribed. I told two of the GPs treating me I just did not seem to get better they told me I had asthma and I had to accept it but following , my first hospital admission lasted three days and it was clear the medics really were out of their depths. it wasn't until my second visIt had seen me in resus from 6.15 to 12.30. Drs round were in the afternoon so I considered myself lucky. Dr dropped the diagnosed of CSS and this was the real start of my journey with css.

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Wasn't my GP but A&E consultants. It was only that short because some post graduate decided to do some unrequested blood tests to earn more points on his thesis.

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It took over two years for me to be diagnosed,even after presenting my self in A and E! My Vasculitis rash on my legs was Ringworm according to the doctor,I knew it wasn't but he was the doctor. My own GP didn't diagnose me I had a urine test and I was identified as having Renal Failure and I was admitted urgently to hospital, I even didn't need to go through casualty. I spent almost three weeks in hospital.

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First ever visit to the GP ( since I moved to UK 2012) was September 2014 with two minor ulcers. Got treated and they healed but very slowly. Beginning of November went to GP with rash and joint pain and swelling. He suspected autoimmune disease, took bloods for lupus, Lyme disease etc and sent me straight to hospital. Got diagnosed 3 weeks later. Although my diagnosis haven't been confirmed by a biopsy since biopsy came back clear.

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I was admitted to St George's hospital via A &E. Presenting with what they thought was pneumonia. They kept me for 2 weeks and did 40 blood tests eventually diagnosed Wegeners. My GPS in 30 yrs had had only 1 case in the past. Other GP had never heard of it.

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after finishing cancer treatment, i developed a violently itchy rash mainly on my legs and lower back. GP tried me with various steroid creams and emollients. Then referred me to a dermatologist who diagnosed Nodular prurigo. Then I showed it my Rheumatogist who declared it to be Rheumatoid Vasculitis, manifested as Nodular Purigo.

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Not picked up by GP, took a private appointment with a good rheumatologist

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Dear Susan,

I collapsed, in London, was taken into UCH and the diagnosed, whilst in there. I had very little, indeed not really any, symptoms prior to my collapse. I DID have some, relatively minor, eye 'problems' that, with the benefit of hindsight, may/might have been a pre-cursor/warning. Still I suppose another 'other' answer is only to be expected!

I will be, very interested, to see the results of this poll-wonder how many 'other' answers there will be?

Please give my kind regards, to John, please. I hope that you are well, as well (??????).

Warmest wishes

AndrewT

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i had been ill for over 6 monthes cud hardly walk dc said artheritis, lost weight and my finger started being sore went bac to docs looked at black finger admited me to hosp same day diagnosed with wg day later, that was 23yrs ago, bin on pred and aza ever since.

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Over 2 yrs

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Over 2 years

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Suffered illness from a young age always the same eventually at 40+ years old and very ill dr decided something was wrong!! ENT and Rhumy between them and many tests decided I had Behcets. By now I already had aquired Asthma, Diabetes, thyroid, swollen hot joints, wounds that wouldn't heal, gallstones, appendix, glandular fever twice (very ill bed ridden 4/5 months each time) lumps bumps and spots all over and random swelling wherever. Have just included the major stuff. Told continuously its in my head even when bloods said otherwise. So a diagnosis was wonderful little did we know that most dr had never heard of it.

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Doctor was understandably treating sinus type issues at the start but this was failing to respond. When the severe joint pain started shortly afterwards he organised appropriate blood tests which pointed to rheumatology. I was fortunate to have private medical insurance at the time, which probably saved my life, and was able to get an appointment in about 2 days. Was diagnosed with WG / GPA within 5 minutes of seeing consultant and hospitalised immediately for 5 days. That was July 2009. Several flares later all is relatively stable at present.

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I had never heard of it prior to being diagnosed. My GP didn't have a clue what was wrong with me. It was only by chance that on eventually being admitted to hospital in extreme pain and after having lost two stones, there was a Vasculitis Specialist on duty who immediately recognised the signs. I am indebted to him!

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I am not yet fully diagnosed but have a temporary one of generalised ANCA positive small cell Vasculitis.

I was first found ANCA + in 07 but it was put down as a false positive and I continued to suffer some very scary and odd symptoms. I am told that I was very lucky to have got to this point and more likely because the treatment for inflammatory bowel disease is very similar to that of GPA. I don't feel lucky funnily enough.

I am awaiting genetic testing for periodic fever syndrome, in London and in the amiloidosis centre, in October.

It seems that I have suffered unecessary pain and very frightening symptoms when my GP really should have had me into specialists in 2007

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It took 6 months , but I had pain long before that. which I was given pain killers for which didn't touch it. Once my symptoms became severe I had trouble getting anyone to understand. I saw a GP out of hours , he told me my rash was dry skin and the blood I was coughing up was from caused by my coughing and making my throat soar. I also saw a Rheumatologist who ignored me and lost my blood test results and xray of hand. Had to see another rheumy who thought I had rheumatoid arthritis.

Went to A&E with severe abdominal pain and difficulty peeing , sent home as I was under urology as I had just had a cystoscopy of bladder investigated as I had blood in my urine, the result gave non cancerous tissue damage.

Finally saw a neurologist who knew this disease and was rushed in with renal failure.

Thank goodness !!!!

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My Dr. looked at me! took my bloods himself & 24 hours later I was in Preston hospital

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I was seen by many different Doctors including my GP, Dermatology, ENT and Respiratory consultants.

All seemed to have their own 'agenda' and mainly ignored the symptoms I described. I eventually collapsed at home but managed to get to a local A&E where my family was told I would probably be dead within 24 hours.

I was extremely fortunate that the Consultant on call had come across one case many years ago and put together a team that saved me. I will always be grateful to them. How sad that they have now retired or moved elsewhere.

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Over ten years. Had a lot of different symtoms.

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It took nine years to found out that I had WG

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Blood test for annual coronary heart disease review by GP early November 2013 (heart bypass eight years previously) showed kidney problem. Referred to renal consultant. Given appointment about 18 weeks later (March 2014) - which I didn't query as GP had said nothing to suggest that the matter was urgent.

Consultant initially thought kidney damage was probably a side effect of taking ACE inhibitor (perindopril) for eight years, and not to worry as rate of decline was very slow (which I took to mean that something else would get me first!). Review appointment fixed for 6 months (September).

Recalled early (July) because blood test results indicated ANCA positive and possible vasculitis, so consultant recommended a biopsy.

Biopsy carried out late August. Called in for results by vasculitis consultant late September who confirmed diagnosis, commenced immuno-suppression treatment (steroid and azapriothine) and booked to return in two weeks.

On next working day received call to attend within one week, as test results showed condition more serious than first thought. Immediately commenced course of cyclophosphamide - early October 2014.

So - 8 months from GP visit to initial vasculitis diagnosis, and 11 months to diagnosis of its true extent.

Also, as I had experienced no symptoms, the problem would have remained undetected if it were not for the fact that I had coronary heart disease and was therefore on a regime of annual GP review.

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5 YEARS

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Five years

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I was very poorly. It started end of April 2010. I was told I had shingles by the hospital but I knew it was not that because I have had shingles before. I have vasculitis large blood vessel disease with another rare disease I was told by my specialist. My first symptoms was feeling achy all over and throat and chest infection. I then had pain in my right temple and my jaw ached and was stiff. My head was itchy and got lumpy and the pain was extreme. I was severely fatigued. Everything tasted salty and was thirsty all the time body ached all over. 2 months passed and was told to go to the dentist because my jaw ached. Nothing was found by my dentist. Back to the hospital in June. My eyes were going blurry. Specialist said she was going to refer me to a connective disease consultant. Did not get appt. August Bank holiday the Friday before specialist rang me at 5.00 pm and said she was clearing her desk out for the weekend and found my notes. I had not been referred. I went straight away to my gp and he said I would maybe have to wait for approx 3 weeks to see the specialist. I said no think I might be dead by then. I got a private appt the next day. Thank God I did. Best 200.00 pounds I have spent along with the cost of blood tests of 882.00. My specialist said my cup was 147 and ear was 142. And I was a time for a stroke or going blind. I have been on prednisone and mycophenate since. My immune system is shot and have continues infections and chronic bronchitis even pneumonia since pick up infections all the time. Has anyone else had problems with diagnosis? Jan xx

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3 years

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After a mini stroke I had a CT scan and then an MRI which showed up the Vasculitis condition. I was lucky a locum sent me for the tests immediately and so I am not left wondering what all these weird symptoms are about.

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My GP sent me to see a "Specialist" privately, who only seemed to make me worse then better. So after 18 months I asked for a second opinion. After some badgering he reluctantly he sent me to someone in London who actually knew what he was doing and correctly diagnosed me !!

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Suspected immediately, took 6 months to diagnose.

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8months and not fully diagnosed p, anca and Fibromyalgla so far waiting to go bk to rheumatology for further test on lumps on shoulders and swelling at bottom of spine

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My gp never considered it, despite 12 years of classic symptoms..only found by consultant who pushed for me to have followup after pneumonia

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It was three months. After many different tests by specialists they could not figure it out, but when I lost sight in my left eye my eye doctor knew what it was. Got a biopsy and I was put on 60mg of Prednisone and it helped (a lot).

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5 years from first symptoms.

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7 months to one year
Other please state