How long did it take from your 1st visit to the doctor complaining of symptoms to getting a proper diagnosis & treatment. Please comment too
It took about 10years for my partner to be diagnosed, quite awful seeing him suffer.
This is dependent on the severity of the symptoms, my Mum had stroke and acute kidney failure so was diagnosed just within two months which I now understand was lucky for her...if you have milder symptoms I would expect diagnosis to take much longer?
Your mother was really lucky, as I was too, luggsey, the doctor on duty the day I was coughing up blood just thought I might have WG (GPA) and he was so right. He saved my life. Alas in our experience even people with severe symptoms still can go undiagnosed or misdiagnosed for months and even years. Sadly some patients are only diagnosed at post mortem.
When I was finally diagnosed, after two and a half years of symptoms and four blue light dashes to A&E, the hospital told me that I was only their second Takayasu's patient..and the first one was found at a post mortem.
my daughter sadly was nearly one of them
G.P reffered to E.N.T fairly quickly following 3 courses of antibiotics for sinus problems which didn't clear .E.N.T consultant required actively encouraging to investigate via anca tests and biopsy which proved postive .Fortunately I was then reffered to a consultant within the same hospital who is familiar with Vasculitis and treatment started immediately .I was in severe pain for some time prior to diagnosis .
it was pure chance due to a rogue blood test. Even then they insisted on another blood test as they were convinced the results were incorrect.
Initial symptoms, sinus problems, about two years always blood when blowing nose. Suffered from regular nose bleeds . Final year saw several trips to GP and hospital A &E sinus problems ( GP later complained about visit as said we had wasted £200 ) 6 months prior started worsening aching joint problems eventually went private Rhumy doc said not Rhumy probs after blood tests - wait for results from ENT. ENT doc unable to get nasal camera in organised operation to clear (GP never picked up on this ) unable to have op as too ill Ended up in hospital rash came out that evening. Young doctor suggested cause (consultant disagreed ) treated with anti biotics and steroids biopsy of rash taken all confirmed
In all about 7 months. Initially treated with antibiotics for sinus problems by GP, and then referred to ENT at local hospital. After ct scan and ANCA test done, biopsy recommended, but long delay in getting this done. Because ANCA negative, WG was first ruled out, but later confirmed by biopsy. Then referred to Dr Jayne at Addenbrookes, where treatment was very prompt.
It took 2/3yrs in total. Many of the milder symptoms have not even noted on my medical records, Its only by the postings on the vasculitis groups that I have been able to add two and two together and realise that there were signs long before I became really ill. It was also by chance that I insisted on returning to the same Dr with the same complaints over a period of time that the Dr was able to conclude that something was very wrong. I was also very lucky that this same Dr had experience with other patients with WG and Behcet's. Once referred to hospital it still took a good 6mths of tests before getting a diagnosis.
My initial symptoms of fatigue and a rash were initially out down to a virus and ringworm, but as symptoms progressed and my blood work showed signs of inflammation my GP referred me to a dermatologist after only 3 months.
I was very fortunate to get an almost immediate diagnosis of urticarial vasculitis. Further bloods led to referral to a rheumatologist and diagnosis of SLE, Sjogren's, coeliac, pernicious anaemia etc! I was lucky to have a good medical team and fairly typical symptoms and blood test results.
i Answered as 1-2yrs albeit still not 100% diagnosed & it'll be 2yrs in May, 2nd Neuro Cons & Rheumy have arranged for me to see Nephrologist as latest bloods still show strong + cytoplasmic ANCA & hightitre (48 IU/ml), MPO antibody & negative PR3 antibody....so they still saying Vasculitis & or MS but few more tests to repeat.
Thinking back, more than 4 years when some early symptoms started. These were variously 'diagnosed' as an allergy to our cat and hay-fever. Various X-rays reportedly showed 'some problems' and usually accompanied by comments such as 'we'll wait and see'. doesn't exactly inspire confidence in the medical profession?
I can't honestly answer.
I've had problems with my ears for most of my life, and problems with my nose for at least 15 - 20 years. About five or six years ago I started getting problems with my stomach, which were diagnosed as IBS, but never brought under control. These are all possible symptoms of Wegener's that could have been misdiagnosed, or they could be completely unrelated.
In August 2010 though, I started getting joint pains, then got skin, eye and chest infections, and was rushed into hospital on Xmas day, where I was later diagnosed (sometime during the next three weeks, while I was in a coma).
For the purpose of the survey, which answer should I put?
Thank you for your reply. You certainly have been through so much over the years. For the purpose of the Poll would you please vote more than 4 years. If that is OK with you.
Voted now. Thanks John
My daughter was diagnosed by the dermatologist at our local hospital, via a skin biopsy from her thigh. She was then discharged by the dermatologist, given a urine test by our GP to eliminate kidney damage,and that's it. We are no nearer to knowing the underlying condition than we were 5 years ago. It took 2-3 years for diagnoses.
if you would like to send me an email sabs please do john.mills:vasculitis.org.uk
Two years at least, difficult to pin down which was the first symptom as it was a general slow decline in my energy and strength which first manifested itself.
I was extremely lucky when i got sick that my bloods were very bad and my GP sent me to hospital, where i was kept in for a week while they did tests,and then i was referred back to my Rheumatologist who did a full blood tests muscle biopsy, arterial biopsy muscle test and nerve test. So you could say within a month of seeing Mr Price-Forbes i was diaganosed. very lucky.
It took 2 years, after my family been told I could have a brain tumour, tested for temporal arthritis .trying several times to remove fluid from various joints, which was not only painful but they found nothing !! , Also seeing several various consultant and several biopsies. The other thing that happened was my GP suggested WG to one of the consultants six months before I was diagnosed. She said it could not be that its very rare !! My luck changed
when I meet Dr Abuzakouk at the immunology clinic ,He had been working with people for several years and put together a booklet for patients with WG etc . I started treatment the same day
First problems I put down to hay fever (never suffered before) in May/June 2013. After over chemist medication did not work, went to doctors with blocked nostrils. I also had bleeding, weeping from both nostrils. A course of steroid spray did not work got referred to ENT, who put it down to polyps, and was booked in to have these removed in October 2013. By September my right nostril was completely blocked, and the left was blocking up every night. One week before the operation my hearing in my right ear started to deteriorate. The operation was unsuccessful, due to excessive bleeding while the consultant was operating. I found this out 2WEEKS later at the post op appointment, and was told to make an appointment with another ENT specialist. I was given an urgent appointment for Jan 2014!! In the meantime my hearing was bad in my right, and started losing it in my left. I also started having weeping from them, and unbearable pain. Total loss of hearing at the end of September and November, and several trips to my GP, in agony not being able to sleep, cold sweats, fever etc. I got an emergency appointment at the ENT ward on 22nd November, had my ears suctioned, and sent home. Went back in on the Sunday 24th, same doctor who sent for a colleague, and was admitted, with high temperature, no hearing, etc. Initially they put it down to an infection, It wasn't until I saw another consultant on the Wednesday, he said it was inflammation, and started my course of IV steroids. I had a biopsy from my blocked nostril on the Friday, which came back inconclusive, although all other evidence was pointing to GPA. I was let out on the 4th December, and had another biopsy on the 21st, December, from deeper down in the sinuses. This confirmed GPA in January 2014. Apart from the messing about with communication with different departments, and delays in getting appointments, I feel lucky to have been diagnosed so quick. Have had my 2nd cyclo, still suffer with headaches, and hearing a little better in my left, no better in the right, but I'm here fighting. My ENT consultants were great, and worked quickly with me when I was admitted. My GP did all she could, and she now has a lot of information on Vasculitis diseases, and I am also under the Immunology consultant for the Cyclo, who is very clear and thorough.
The Rheumatologist at my local hospital referred me to an infectious disease Doctor at Addenbrookes, who suggested I have MPA. The Rheumatologist, who specialises in vasculitis was adamant I didn't have vas. After pressure from my GP he sent me for a kidney biopsy, which was positive. Total time 19 months.
A very good survey, it will be interesting to see the results.
I visited my doctor about 4 months before I was diagnosed, with joint pain that moved from joint to joint. I had blood tests but was just given iron tablets for anaemia. I went back about 3 months later for what I thought was a chest infection, I had been coughing up blood and had become extremely breathless. Luckily for me I happened to accidentally cough up a large clot of blood in the doctors surgery and was sent for an X-ray and then immediately to a chest consultant. After many questions about symptoms that I had not even realised were related, black spots on my legs, bruised tongue, bloodshot eyes, blood in my urine, recurring sinus pain etc, he diagnosed me there and then and sent me straight to hospital. My ANCA test came back 2 days later, confirming WG. I consider myself to be very lucky to have been diagnosed so quickly.
about six months
Probably about 2 months. Initially ear pain - I thought it was from the flight I had just taken but it did not go away. Doctor started treating this as ear / sinus infection but nothing was touching it and I went very deaf. Very soon after I started to get the roaming joint pains, doctor originally thought this was part of the infection. The pain got so bad I could not walk so went to doctor again. He realised it was something else, but did not know what. Organised a blood test and from the results he pointed me at a rheumatologist. I saw him within 2 days of the results and he diagnosed me in 5 minutes! The rest is history .....
Even after over a year of complaining to my GP about severe symptoms, nothing was done so my heart started to fail which resulted in me having hours to live. Talk about being lucky to be alive!
I was initially misdiagnosed with ME. It took over 3 years after first falling ill for me to be diagnosed finally with cerebral vasculitis, and only after then could proper treatment start.
When I eventually went to visit my doctor I could hardly walk or move my arms and was in obvious pain he gave me a months supply of painkillers! I was getting worse so took myself off to see a rheumatologist who decided it was PMR with high inflammation and treated me with very high dose steroids which didnt agree with me affected my eyes and stomach and I lost 2 stone. Thought it may be cancer had all the tests including endoscopy and various biopsies all negative luckily the surgeon was concerned about my inflammation level and sent me to a rheumatologist who arranged a PET scan and confirmed I had GCA and told me to start on cyclophos immediately otherwise could lose my sight....bit scarry.... at the same time he gave me steroid injections but still lost weight.....6 months later now being looked after at Addenbrookes on methotrexate and steroids....early days but starting to feel more positive as I feel I am being looked after and have now gained back the two stone I lost! Previous to all this had to call an ambulance as I had something that felt like my body had shut down....in hospital for a few days but all tests were negative and they put it down to a virus? I guess overall it was about a year to diagnosis.
I was blue lighted in to my local hospital ( N&N ) in Norwich 12 times with blood pressure off the scale and the mother of all headaches. Each time I was kept in 24 to 48 hours , given the same tests repeatedly and discharged. I even lost my eyesight twice for short periods whilst actually in hospital!
I was misdiagnosed many times varying from migraine to the most insulting one of all being "it's all in your mind ".
I must be the luckiest person in the world to survive those five years and live to tell the story. On a routine visit to the rhuematology dept. I was lucky to see a junior doctor, not long out of Med school. She was given the same info that I had been giving my usual consultant for 5 years and within 10 minutes Was given multiple blood tests and started on steroids the same day. I have relapsed 3 times but that junior Dr gave me the chance to fight back. When she moved on I moved to Addenbrookes where the care is magnificent.
However mine was only 2 months because by than my body had shut down and was admitted into hospital where they than later diagnosed me.
Also had I added the symptoms together earlier and not afraid of gp/hospitals It would probably be easier to have connected the dots - 2 YEARS before.
My first major episode was in late 1998. My GPs consistently dismissed my symptoms and recommended cognitive behavioural therapy. I knew I was ill and searched through specialists privately until a dermatologist looked at the rash on my feet and legs and suggested vasculitis. I asked my GP for a referral which I received the following year, 2007 when I was finally diagnosed. I am now treated at Dr. Jayne's clinic at Addenbrookes. The relief is very great. The frustration and humiliation of being disbelieved by my GPs and being treated as 'worried well' was depressing and degrading when I felt so ill.
I was pregnant when I first went to the doctor and my joint pain was put down to hormones. I wouldn't take pain killers so it some became unbearable, unable to move and quickly spread to my other organs. i was admitted to my local hospital within 3 weeks, helped by the fact that i had just signed up for private health care. How lucky was that!. The rest as they say is history.
I have been suffering from sinus ,ear, & eye problems for a number of years. All of 2012 I kept complaining I was unwell but couldn't explain why, then August 2012 I had a cough I couldn,t get rid off & started to go off my food. I also lacked my usual energy. I went to see my GP & was told I had asthma & was put on inhalers with NO tests being done. These inhalers made me feel really ill my appetite became worse & my energy levels decreased. The Dr did not want to discuss this with me, what did I know she was the one that went to medical school!!! Things just deteriorated until I could barely walk, was in a lot of pain, no longer eating & barely drinking. My Xmas day dinner consisted of one roast potato. All I wanted to do was take to my bed & follow that light at the end of the tunnel.I had a now reached the point where I knew what my options were, so on a Saturday morning we called in the Dr on duty.Luckily it was not my usual GP, the first thing she wanted to know was the result of my blood tests & was horrified to know none had been done. The monday morning I was taken to the surgery for blood tests Monday evening admitted to hospital, Tuesday morning I was told I had WG.
I was diagnosed after about 9 months of misdiagnosis, and then only because I Suffered kidney failure.
I had mild symptoms for about a year but not severe enough for me to consider medical help (I just thought I was getting old). Rapid deterioration started after a cold virus. In all I had three GP visits and an A&E visit where I kept being told I was suffering post viral symptoms. I finally got admitted to hospital for a week, however despite exhibiting severe kidney problems I was referred to a hospital without a renal unit. After a week with no diagnosis I was sent to another hospital with a renal unit. Thankfully that happened to be the QE in Birmingham and the renal consultant correctly suspected vasculitis straight away. That diagnosis took just under two months since my first GP visit. I count myself lucky.
4-6 months. I went to a GP in the January with a chesty cough that wouldn't clear. She sent me for a chest x-ray and took blood samples (as I hadn't been to the surgery for @10 years). Blood tests should underactive thyroid, and x-ray showed fluid on both lungs, which she thought unusual (most people only get fluid on one lung) so she referred me to a Respiratory consultant who did more blood tests and CT + MRI scans. The RC talked to a Rheumatologist, who came up with a possible WG Vasculitis diagnosis. I went in for a day of tests in the June, at which point I needed a wheelchair to get around the hospital, and a urine test showed my kidneys were failing (@20% GRF), so I was admitted to the Renal ward, where the consultant did a kidney biopsy, which confirmed MPA.
GWA/WG diagnosis ultimately made via ENT tissue biopsies and C-ANCA results.
it took 6 to 12 monthes to diagnose i had wg. as soon i was on pred i was a lot better and bac to work in 6 wks. that was 20yrs ago i cud count the days ive had off sick on one hand. i think my self lucky i cud b a lot worse. steroids and azaathyapin done a great job on me!
After a diagnosis of osteoporosis at the age of 32 and highish ESR and CRP it took a further year of tests (mainly unpleasant gastro ones) and feeling generally a bit unwell to diagnosis the underlying Takayasu's arteritis. Apparently if someone had just listened to my right sub clavian they would have heard the bruits!
Its always difficult to tell because the first insidious symptoms can pass un noticed for a long time
still waiting on a diagnosis - I was given a diagnosis of unspecified vasculitis (confirmed by skin biopsy) but this was overruled by another hospital where the patholagist viewed the same sample and deemed it normal.
I think about a year?? I had problems throughout pregnancy in 2012. When my baby was born by c- section in Feb last year a lot of the symptoms remained (including hormonal rhinitis which became a non allergenic rhinitis then sinusitis) then after about 15 trips to my GP ( including one where it was suggested I was using cocaine??!) and 5 visits to ENT I had a chance consultation with another ENT Doctor where vasculitis was suggested. An inconclusive biopsy from my nose (done after a further 3 weeks wait) was not enough for diagnosis despite being ANCA+, suffering loss of hearing and having other symptoms. My GP agreed to refer me to a specialist unit out of area and I finally was diagnosed in November last year by the consultant there. I'm currently perusing a complaint about my treatment by the ENT Doctor who refused a diagnosis and treatment. I have tried not to let my illness over shadow my baby's first year but it has been hideously stressful and sad at times and my partner and I long for the return to my normal...but hey I'm very lucky to have a gorgeous little family!
From my first GP visit to diagnosis it was approximately 5 - 6 weeks
I have put 1-2 years but I think it may be much longer. I have had many health problems for the last 25 years, I had severe bowel problems for years which was put down to IBS. But in 1991 after the birth of my 3rd child my symptoms became much worse and ended up with an emergency total colectomy for ulcerative colitis, toxic megacolon.I was in hospital for a couple of months. When I was discharged I was in pain, with pains in my chest and left shoulder, but was told it was indigestion. After an unpleasant night I called my GP who sent me straight back. I had a PE. Over the years I have had 4 major operations on my stomach and lots of health problems, too many to write about. I have been diagnosed with pulmonary granulomatous vasculitis in October 2013, but this took so long. As like so many of you on this site I had been to my GP so many times she is very good and did every test possible,she said I was the most screened patient at the surgery.To cut a long story short, my blood tests were coming back ok I am ANCA Negative. Over the last 2 years I have developed Type 2 Diabetes which is reactive so difficult to manage this was adding to my problems.In November 2012 I had a number of severe chest infections, I ended up in A&E with chest pains because of my history with the PE I was given a CT scan which showed multiple lung nodules. I had the usual camera, CT biopsy,but with the wait between appointments this took many months. The only other option was to go to the Brompton in London in October to have Vats lung biopsy from which I have a diagnosis. I have most of the symptoms of WG. My biggest frustration apart from it taking so long was that a number of consultants had said I needed to see a Rheumatologist but wouldn't refer me. I had to go private in the end but he said I needed a MRI which was going to be too costly so reverted back to NHS, to date I have still not seen one. I was started on treatment just before Christmas. I asked my Thoracic Consultant to refer me to Addenbrookes which he has done and I have an appointment for March.
Fascinating spread of results - I am sure if you had wanted such an even distribution you would have had difficulty planning it! The bad news from the survey is the average length of time taken to get a diagnosis.
They are fascinating results pwc51 and will be very useful evidence when I go to London next week.
I went to the GP with pain in my left hand and arm with numbness in tips of fingers in October 2012 was given a splint and sent on my way. The numbness and pain got significantly worse and I went back to see another GP who sent me to a neurologist in December 2012 after I started to fall over and had a serious kidney infection. I was referred to the royal frre after a nerve conduction test which I had in feb 2013 at my local hospital. I then started tests at the royal free in may 2013. I still dont believe I have a true diagnosis. I have been left with complete numbness and weakness in my left hand, numbness of lower left leg and weakness. Now my right is slightly weak as well. I often feel like jelly legs x
My disease was very aggressive and was only diagnosed and i was only taken seriosely after the css attacked my heart and my peripheral nerves . Had i been diagnosed and treated sooner i would not now be disabled
I was diagnosed within 4 weeks but by that time my kidney function was just 2%. I would not have lived to get to the 2 months stage! The GPs messed me about for those 4 weeks - not even a blood test - just gave me antibiotics for a UTI (which I didn't have) and told me to drink more. I even had Wegeners displayed on my GP notes as my mother and uncle both died of it many years earlier. I eventually diagnosed myself and was admitted to hospital and received first rate treatment at the Manchester Royal Infirmary. My kidneys have recovered to 21% functionality so I am lucky to not need dialysis at the moment.
I found this difficult to answer as my MPA was diagnosed (with a question mark) within 3 months but, at this stage, I had no kidney involvement. Once the kidneys became involved, 4 years later, I was living in France and not doing well on only 5mg of prednisolone daily. I was finally admitted to hospital, peeing what looked like pure blood and feeling ghastly, with a diagnosis of kidney stones. Despite the medics knowing I had vasculitis, they continued to search for passed kidney stones and sent me home, after a week, with no treatment. It was only because I returned to England and the MPA was re diagnosed, and the correct hit it hard drug regime prescribed, that I am still here to tell the tale! In other words, I reckon 6 years for a full correct diagnosis but I have put 2-4 months in the poll.
Diagnosis came to a head for my husband when creatinine levels hit 300 and he was very ill, vomiting, diarrhea, cold sores, swollen tongue, poor concentration, etc.
Previous symptoms were skin rash, shortness of breath, swollen and sore joints, blood in urine.
Voltaren prescribed for the swollen joints didnt help
After spending 6 days in hospital and showing signs of improvement by drop in creatinine levels having been on predisnone , hubby started cyclophosphamide. 2 days later increasing discomfort in legs led us to Doppler revealing massive clot in thigh and multiple clots in lower calf so back into hospital with clixane injections and warfarin tablets.
I didn't vote in the poll as still not diagnosed - tho been going to dr with rash and other symptoms for two years now- with four major skin flares - this one being the worst. A year a go I was told I had chronic folliculitis. I have finally got a referral and have an appointment with a dermatology consultant in May. I found this poll very interesting - at least I know I'm not the only one to have had to battle !
Can you send me a private message or email - email@example.com - describing your other symptoms. It may be that you need to see someone other than a dermatologist.
Still not properly diagnosed and been ill for over 12 years. Positive biopsy and lots of blood tests have not really done any good, I am on a very steep learning curve.
less than 2 moths after the third major stoke which left her brain damaged on left side and anasphia ,did someone see the scan that knew it was cerebral vasculitis, and treatment started but was to late to save her brain
I was treated for asthma and referred to a Chest Department of a hospital where they did tests and said it was "intermittent". This went on for about 2 years and then my chest gradually got much worse and at times I could hardly breathe when walking on the flat. Eventually I was diagnosed with bronchiectasis by a NHS homeopath (against my GP's advice!) after 5 weeks on a homeopathic ward. The next development came about 2 months after that admission with bowel symptoms which steadily got worse over 4 to 5 weeks, necessitating a call-out to a locum on Christmas Day! She noted how thin I was ( I hadn't been able to eat for 2 weeks or so) and recommended I saw my GP a.s.a.p. He made a home visit and referred me to a Consultant...after telling my husband there was nothing wrong with me...it was "all in my mind" !!?? Fortunately the consultant came to our home and admitted me...It took 6 weeks until I was given a diagnosis...and he really had worked hard.
This was over 30 years ago...and I know things have changed somewhat...but reading people's accounts on this website has made me realise I'm lucky to live where I do..now.
However...after I was eventually discharged in1982.... I started to have a lot of Nose and Ear problems, necessitating several small ops...no one considered it might be the Vasculitis. Even when I had a 'flare up' in 2007 affecting my nerves and muscles...I was only treated for that by a Neurologist, albeit in the same hospital. I was eventually referred to a Vasculitis Consultant in 2011 after being asked in a routine Ear appointment if I "would like to be"! As my general condition was, in fact, worsening...and I was probably in denial...I accepted this..just for interest! I really think it saved my life. Now,3 years later I feel so much better and am almost off my MSM.
Hi Pollie, that's certainly an interesting but harrowing story! I was talking to a lady only yesterday who was diagnosed with CSS 8 years ago & has a similar story. Perhaps if you would like to send me an email you might like to talk to her & give her some support. firstname.lastname@example.org
BW - john
20 months ago i went to my GP asking for an appointment with the fatigue clinic. I had been treated and cured for hepatitis C and it was year since i was "cured" During the year since i finished treatment my fatigue was getting worse and i had pain when walking, i had lost 10kilos and had no appetite. I saw a nutrienist, physio, and a dietician, all the time my symptons were getting worse.
Finally The fatigue clinic said that they suspected "Mythenia Gravis" and that i would be seeing a neurologist. I was about to go on holiday for a month and was advised to cancel.
It took 20 months before i finally got an admission for a nerve & muscle biopsy, via several neurologists, nerve funtion tests and lots of blood tests. amd a scan
I have an initial diagnosis of vasculitis, cryoglobunemia, periphial neuropathy. The biopsy was 7 weeks ago and i still wait for the results.
I was diagnosed in under 4 weeks from first visit to doctor. Had symptoms for 2-3 weeks prior to that. At diagnosis, my kidney function was at 20%. Feel so lucky that I was diagnosed so quickly.
I repeatedly went to doc after progressively getting sicker and weaker undergoing test after test. Finally diagnosed after I admitted myself to the ER in kidney failure and severe anemia at 2.5 months into my vasculitis September 2012.
It took 7 months for me to get my GPA Wegener's diagnosed a biopsy was taken of my sinus when I has FESS surgery in July this year and along with ANCA positive they said it was GPA I am now being seen by Professor Pusey and the Vasculitis Team at the Hammersmith hospital renal clinic.
This is my 6th year, still undiagnosed, had bad headaches for 10 years, sinus probs had a septoplasty, didnt help much, Began to feel tired all the time, just really fatigued and could sleep for hours, felt so cold all the time too, even in the summer months at times. Then in 2009 i got a mad thirst, couldnt stop drinking and peeing, after over 8 months i was diagnosed with diabetes insipidus, have a huge pit gland but no tumour that is showing up. I have had numerous blood tests, so many tests, mri's and a pet scan, i have fluid sacs on the brain and still waiting for a diagnosis of WG. My rhuemy doesnt think i have this at all, even though ANCA test was positive, i am waiting for a nasal mucosa biopsy as tracer was found inside the nose when they did the pet scan. Since then i have alopecia and seen a dermatolgist, im so depressed and miserable as its getting bigger..so fed up with waiting, they have no idea how this can affect a person.
I have just been diagnosed with Wenegers after visiting my GP for the first time on 16 January. I became aware of feeling unwell at the end of December. I thought it was a flu virus but after another week of worsening symptoms (joint pain and raging temperature mainly) the GP referred me to the dept for infectious diseases at Heartlands hospital in Birmingham. Following a chest X-ray I was admitted to the hospital and the suspected diagnosis confirmed by CT scan and bronchoscope. Thankfully my kidneys are fine. I feel very lucky that my GP acted quickly and referred me to the right place as it was clear he didn't know what was wrong but suspected something unusual. The hospital consultant told me that most GPs will only see one case of Wenegers in their working life, if that.
I've put 4-6 months for diagnosis since I was seriously ill with hemorrhage on lung first time back in December 2017, but I have suffered with recurrent chest infections and what was thought to be double pneumonia twice within the last fifteen years and looking back I think my MPA has been flaring. I was lucky as was seen quickly by Dr in Oxford who specialises in wegeners which they originally thought it was but Anca came back negative and I was discharged after ten days. Had another pulmonary hemorrhage in MARCH and this time got lung biopsy that diagnosed MPA and Anca now positive.
Eight weeks since first seeing GP for what I thought was flu or an old injury giving me head pain. I then saw another GP who alerted my Rheumatolgy consultant. From that point my consultant went into overdrive ‘phoning me at home and even whilst I was on my way to hospital for a scan to have my eyes checked and ultrasound whilst I was there. I was at the hospital every other day having scans-mri-ct-pet…then a biopsy which confirmed GCA all in the space of a couple of weeks. Worth noting that neurology misdiagnosed neuralgia but did tell me that it was critical that I inform rheumatolgy about night sweats which raised the alert. Rheumatology felt they might have picked it up earlier but apparently it was not presenting as expected(don’t really understand) and apparently they are looking at RA patients like myself who were on etanercept as they have had a couple of others presenting differently and are wondering if etanercept has any part in it.
Nothing but praise for my consultant,the GP and all nhs staff I came in contact with.
My GP thought I had a slight cough and a sore throat despite not being able to speak without coughing! She then referred me to an ENT consultant who referred me to a Respiratory consultant who carried out a full range of bloods (no one else did this) who suspected what I had and referred me to my Rheumy.
My Gp insisted I wait for 6 weeks with the cough before sending me for a chest x-ray which showed my lungs were clear. That took about 2 1/2 months. Then another two weeks for the letter of referral to be typed 😡. ENT consultant referred me directly to Respiratory consultant ( no two week wait for letter to be typed) and then within a month I was on steroids and cough gone.