Before you were diagnosed with Vasculitis, w... - Vasculitis UK
Before you were diagnosed with Vasculitis, what was your level of knowledge of the disease? please leave any appropriate comments.
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Had never heard of it & judging by time it took To diagnose nor had anyone else - Luckily local hospital gad a very knowledgable Renal Consultant who specialised in condition who sent me to Kings College London for judges biopsy that confirmed Wengeners Vasculitis
As soon as I was diagnosed the search for information began - I wish the road map had been available at that time as it took a long time to build up the picture and gain a good understanding. My consultant was excellent but could not convey all the information I have subsequently gleaned.
I hadn't ever heard of vasculitus before I was diagnosed
I had never heard of it before
Diagnosed 2004.
I was ill from June with what my Dr thought was bronchitis, pleurisy, again bronchitis.
Sent for an X-ray all clear, was put on antibiotics and inhalers but of no use, had an endoscopy all clear. The following week admitted to hospital after i lost 2 & 1/2 stone in 5 weeks 10 days later 21st August 2004 i was diagnosed with Wegener's after i mentioned to a Dr i had, had another nose bleed.
Thank goodness i did as he said i think i know what is it. I was then sent to ENT camera up my nose the next day it was confirmed.
My next X-ray was a different story as it was all in my right lung.
I was diagnosed back in 1997 (ill since 1994) when there was no vasculitis information available for patients, and no charities that I knew of. And my form of vasculitis (primary cerebral) was particularly unusual.
I was much more familiar with MS which the consultant had thought I might have, and did a differential diagnosis against. And of course ME which I had been misdiagnosed with for 3 years.
My first referral to ENT was in May 2012, when an ANCA test was done. It was only because I saw "Wegeners?" on my form before I handed it in, that I begun to look it up. Then I was told in July that it was not Wegeners, but since they didn't know what it was I needed an urgent nose/sinus biopsy. So I put it all to the back of my mind until I got the results of the biopsy in October.(The so-called urgent biopsy had taken until September to get done!) The outcome was a diagnosis of Wegeners, although I was ANCA negative, and I was soon referred to Dr Jayne at Addenbrookes. This was when I really begun to understand what it was all about.
I was fortunate in that the Consultant who diagnosed my G was aware of Vasculitis UK which enabled my family to do much research thereby enabling us to ask appropriate questions regarding treatment. Must admit that his comment that 'You will be dead within 6 months if it's untreated' - concentrated my mind and made me determined to beat it.
My then GP abandoned me as he didn't have any knowledge of it. I'm still training other though!
My GP admits he knows nothing and is happy for me to deal directly with my consultant, which I do!
No knowledge at all, and at the beginning I really felt too ill to find much out as I was too dizzy and fuzzy to use my computer or go to a library. GP didn't seem to know much either! Then my son came back from Hong Kong with an iPad and I started getting some information as I could use that.
Some knowledge of autoimmune though, as our dog was being treated for an autoimmune anaemia and our vet was happy to give us lots of information on that.
I had never heard of it and I was in the medical profession. This was 2002 also the Doctors that I attended had very little knowledge especially PAN it was a chest physician that felt there was something underlying to my repeated pneumonia and chest infections he referred me to a consultant rheumatologist then I found myself on the right path and since I have received the very best of treatments anyone could have.
I was diagnosed with WG IN 2003 not even the doctors knew much about it. I was lucky the doctor that I went to see with bupa at the time was aware of the illness Dr Rashid Luigmani he is now based in London. Took me allot of years to actually find anyone else that had it now I've found quite a few of us through the LAUREN Currie twilight foundation. Still finding out more about it even after having it 12. Yrs.
My husband John was diagnosed 14 years ago (2001) with WG. In those days the only support around at that time was the Stuart Strange Vasculitis Trust here in England. I found them very helpful and supportive. John eventually became chairman in 2009 and changed the name to Vasculitis UK.
Dr Luqmani is in Oxford these days at the Nuffield. He is also very much involved in research and is part of the RUDY study here in England. Also DCVAS which is International vasculitis.org.uk/news/rudy... vasculitis.org.uk/research/...
He is also involved in the BOTNA Research Institute and the Nuffield Orthopaedic Centre 
I met someone on the stroke ward in hospital earlier this year who mentioned that she had TA and explained what it is.
Weeks later I was diagnosed with PACNS, which I'd certainly never heard of. Judging by my GP's bewildered face on receipt of the diagnosis from the consultant, neither had she.
I fell ill in 1994, I was in and out of hospital for 6 months & then transferred to Addenbrooks. After every sort of test for another 18 months, Dr Martin Lockwood finally diagnosed WG. I had never heard of it & even had difficulty in remembering how to pronounce Wegener's Granulomotosis. Luckily, I was introduced to the Stuart Strange trust that continually informed of the disease. After 3 remissions over the years, I have now been in remission for 4 years & Dr Jayne is confident that I should now stay in remission. (fingers crossed).
I was diagnosed in 2002 after constant visits to GP . I realise now that I had classic symptoms but it was only on hospital admission that I was diagnosed. At first it was thought I had lupus but after a couple of days as an inpatient I was diagnosed with WG. Very little info available. I relied on my daughters checking it out on the internet.
Before I was diagnosed I had never heard of Vasculitis, neither had family & friends. Was diagnosed in 2013 after being very poorly for over a year.
I'd never heard of it. Was terrified by what I found on my first Google search and thought I was going to die very soon after I was diagnosed. Lucky to have had all the necessary treatments but desperately sad of the impact that it's had on my life. I initially found there was little support from the matter of fact doctors and have blanked so many negative memories I can hardly recall anything from the last 18 months.
I had polymyalgia and had never heard of it but when I got polymyalgia I was told about giant cell arteritas and even though I was told I would most probably not get gca, I read up on it and 9 months after getting PMR I got GCA, that was in 2013.
Last March I was rushed to the hospital with a blood clot in my right arm. They did a biopsy of the artery and discovered that I had large cell vasculitis. Later a CTA confirmed that I had inflamation in the subclavian, bracial, and axillary arteries in both arms and in the vertebral artery in the right side of my neck. I had never heard of anything like this and noone else seems to know that much about it either. When I asked one of the doctors how I got such an awful thing, he said that I was just "unlucky". Duh. This past year, I have had to mainly educate myself through the internet and various periodicals. I am very thankful to have finally discovered this forum. I don't feel quite so alone anymore.
They call it unspecified vasculitis. I am on low dose steroids and 10mg methotrexate. Does anyone have anything like this?
Has anyone mentioned or talked about Takayasu's Arteritis? London37
In January 2015, an angiography with catheter was done. The findings were: No significant proximal great vessel stenosis. Both common carotid arteries are widely patent. So my aorta seems to be ok. I don't seem to fit into any of the traditional categories so they just call it "unspecified". I also have tinnitus and neuropathy ( but not diabetes). Noone can find any reason for either, so they call those "idiopathic". I have spent most of this year going to doctors, having tests done, and sitting in front of the computer trying to find answers. Call me "frustrated" 
I was diagnosed by my GP as having severe asthma. I didn't agree but was not allowed a say in the matter .I was firmly reminded I was not the Dr. One Saturday after 9 months of my condition deteriorating I had to call out a Dr, could barely walk at the time, who did some blood tests. The following day I was asked to go straight to the hospital & was seen by Dr Watts at Ipswich hospital. He told me he was 99% sure he knew what it was but would let me know within 24 hours. He was right it was WG, a kidney biopsy confirmed his diagnoses.
For a long time I confused my Wegeners symptoms with side effects of the drugs I was on for Atrial Fibrillation, which started about the same time. I had been seeing a respiratory consultant about a persistent cough which had lasted 18 months. I complained that 'something feels wrong in my chest when I jump up and down' and, more or less to pacify me, he ordered a chest CT with contrast. After a 3 months wait for the scan this turned up lots of crud in my chest, even though a chest X-Ray was still normal.
As is usual with the NHS, once you get to the point where somebody is actually looking after you the care was fantastic - the medical and nursing staff were rigorous, caring and very professional. We went from a strange CT finding, to a firm diagnosis with a kidney biopsy, to starting treatment in a week, which I thought was pretty impressive given the amount of tests which were gone through. The final diagnosis was Oct 2014.
The 3 month wait for the CT scan I'm less happy about. A Radiologist told me the scan only costs about £100, and the main reason for the waiting time is that the Trust won't pay for overtime, so we have an expensive piece of equipment only used part of the 24hr day. The amount of money the NHS has spent on me for treatment and drugs since must be enormous, and there is some permanent damage that will cause further problems and costs in the future. I suppose this is a consequence of a policy of 'rationing by waiting'.
My daughter had an employee sick note with the diagnoses of Wegener stated the person had been off work ill for some time and eventually returned to the Ukraine to have an investigation .She was diagnosed there .When my Daughter googled the term Wegeners she noted the symptoms were very similar to mine and that is the first we knew of it .I did not believe that could be happening t me and was in denial .I was eventually diagnosed 2 months later .
I'd never heard of it. Diagnosis took too long. I'd had a cough for 3 months, pains in joints and muscles, felt ill, had loss of appetite and nausea. GP sent me for a chest X-ray a - no blood or urine test, results took 10 days but showed nothing. As I told him I felt very ill, he took a blood test, checked my chest again and because he could hear a rattle arranged for me to see a chest consultant the following week. I was very lucky as I saw a wonderful Registrar a young woman who was very thorough and asked for a urine test. Her diagnosis was " It's not your lungs it's your kidneys" and arranged for me to have a kidney scan and biopsy. The renal consultant told me that doctor had saved my life as my kidneys were failing eGFR 14 and CRP nearly 200. If the GP had known more he could have saved me a lot of distress. In hospital I was told I had MPA. My daughter, a doctor had never heard of it and set about finding out. So, I know a lot more now.
I had never heard of it before and, like Lauriescott1, it took some time for me to be diagnosed. I had been ill for six months, lost two stone in weight and was in a great deal of pain. It was originally thought I had RA and, eventually, had an appointment to see a rheumy - who didn't really know what was wrong either. After my GP got involved, I returned to hospital to see another rheumy, who knew exactly what I had and admitted me that day. An amazing man!
I was diagnosed with Rheumatoid Vasculitis and am on a cocktail of drugs. I had Rituximab last December, which has done wonders.
From personal experience, GP surgeries should be made more aware of the condition. The first rheumy I saw made me feel I was totally wasting his time!
As a nurse I was aware of vasculitis and it's various forms but had never cared for anyone with it.
3 years down the line I now have a tentative diagnosis of Behcets. There has been a lot of heartache along the way including a diagnosis of " significantly psychological ".
My diagnosis went from PMR, to GCA, to Lüpus, to connective tissue disease and now ? Behcets. I am lucky not to have end organ damage but that has made getting a diagnosis harder.
I have travelled all over the UK seeing Dr's to try and get diagnosed. Fortunately my GP has been excellent, some Consultants less so!
It has been an eye opening journey, made easier by the help of VUK, this and the Facebook group. I feel very let down by some parts of the NHS, at a time when I felt least up to it I have had to push, ask questions, research and fight to be taken seriously. I am lucky in that I have a supportive husband, knowledge and the funds to do so. I pity the patients that don't.
Had never heard of vasculitis before I was diagnosed like seemingly most of us. I had been feeling quite unwell for a few weeks before admission to hospital and had lost weight. Up until the morning that my GP sent me to A & E I was working full time as a carer. My first symptoms were black/purple fingers which I put down to scraping the ice off my windscreen one cold morning. A few days later I had splinter haemorrhages on all nails. My GP sent me to A & E thinking it could be a possible heart problem. I then spent 2 weeks in hospital having a load of tests which at the time made no sense at all to me. They all seemed so random. However after coming out of hospital I had a PET scan and was told I had eosinphilic type and now unspecified but GCA/Takayasu/PAN type. Three years I'm not doing too badly.
I was diagnosed with Wegner's Vasculitis GPA 25 April 2014 after 8 weeks of severe symptoms and various visits to the hospital for tests and scans etc. I went into hospital 8 May 2014 where I spent 6 weeks, 4 of them in critical care as it involved my lungs and kidneys. I had never heard of this before and don't think my GP did as not of my symptoms seem to ring any alarm bells....I had to ask for a referral myself to ENT as I was suffering badly with my ears.
Never heard of it but now I have it, it is a very sinister disease that needs extremely good treatment.
Never heard of it before. Also many people in the medical profession had limited knowledge. I was very very lucky I was referred to a Rheumatologist who had a special interest in vasculitis and I have been under his care for the last 12yrs,
Didn't have any knowledge at all still really don't know anything about it.
Dfrom my professional life I was aware if Temporal Arteritis, but not aware of the wider systemic affects and types
I had never hear of it. It was my GP that first picked up on it and referred me to hospital. By the time I had my first appointment I had read up and joined this group. It took the hospital 7 mths to give me a diagnoses of a mild case of Wegeners. 3 yrs on when I asked do I have GPA? I was told yes but not fully, what ever that means?
None at all
I was VERY lucky apparently a 'passing Professor', from another Hospital entirely recognised my condition. He then initiated treatment.......The rest, as they say, 'is history'.
Before diagnosis, I never heard of it, and I am decently well educated in healthcare issues; I write patient information education- none of the people who were running the scans and tests had heard of it, they didn't know what was wrong. It took many months and more symptoms to show up before a rheumatologist at the hospital made the diagnosis and it was later confirmed by biopsy. Even later, all the medical people I encountered during this journey have never heard of it; the ones involved with me did more research and reading so they could explain it to me and treat me.
I had never heard of Vasculitis before. I am knowledged now but has taken over 2 years to get to this.
The best thing is knowing this site is available to talk to others.
We also think it is also a valuable community for all those diagnosed with vasculitis.
I felt very ill for several years, experienced bad headaches, severe fatigue, memory loss, fluctuating high and low blood pressure and other symptoms before having a bleed on the brain and being admitted to the Neurological Centre, University Hospital Southampton, March 2015. Previously I had a CT scan which proved inconclusive and then paid privately to see a Cardiologist who did not come up with a diagnosis and just advised alterations to blood pressure medication and to keep weight under control. Vasculitis was not mentioned and not even looked for as far as I was concerned. However, I was fortunate to have a very good and caring Neurologist, Dr Sean Slaght in Southampton who advised and arranged a brain biopsy. This subsequently revealed I had PACNS, started cyclophosphamide infusion chemotherapy immediately, high dose steroids and then methotrexate. Without doctor Slaght and the diagnosis at that time, I'm not sure where I would be now. As we know this is a rare and chronic condition and therefore I am monitored by Doctor Slaght and also the Rheumatology department at Q/A Hospital Portsmouth. I do also appreciate the help and support of Vasculitis UK particularly as there appears to be nobody in the South or in my support group who I can talk to and has the same condition. I am therefore quite prepared to communicate with anybody else who experiences be same illness .MelBeck.
