Were you misdiagnosed before being given a f... - Vasculitis UK
Were you misdiagnosed before being given a final diagnosis of Vasculitis?
John_MillsVolunteer171 VotersPlease select one:
I was diagnosed with peripheral neuropathy (cubital tunnel syndrome).
Did you get numb fingers when driving? Forearm pain? Headaches?
I lost the ability to use part of my left hand, paralysis and despite that, pain! It simply stopped functioning.
I had a sore throat and a rash
Consultant thought I had TB
I spent five weeks in hospital been treated for Cellulitis of the face,but there first thought was a brain tumor.
I was diagnosed with chronic sinusitis when I first went to the GP with severe face pain. It was then 5 months before I was put on steroids by the local hospital but at a dose which was later said by Addenbrookes to be very undertreated.
Before that, for approx 3 years, I had sought help with inflamed eyes at the GP and later the ophthalmology dept of the local hospital. I was treated for dry eyes and blepharitis. Later I was also told I had a blocked tear duct and then an allergy to artificial eye drops. Recently I have been led to understand that these diagnoses were inaccurate and that the difficulties were the first symptoms of WG..
Just prior to diagnosis I also sought help with a very swollen left lower arm which was thought by the GP to be caused by an infection.
Also 3 years before diagnosis of WG I had a very painful area under the ball of my foot. I don't yet know if this was connected with the WG but I have read that it may be a symptom.
Approx 5 years before diagnosis I went to the GP with severe fatigue. She did a blood test but found nothing.
John was not misdiagnosed...but he was tested for TB first because of the Xray appearance of his lungs (it could have been TB) a biopsy was taken from the lungs.....also I believe TB had to be ruled out because the treatment for Vasculitis can open the flood gates for the TB.
Susan
I was diagnosed as severely depressed! No one had bothered to take a blood test ...
Maybe we should have included this in one of the eight answers.. quite a few people have been in touch with us with the same story...very sad.... One lady only yesterday...
Susan x
I was misdiagnosed with just Myalgia. As a result for 18 months I was given the wrong meds. and meds that actually made my condition worse !!! Finally, correctly, diagnosed after asking for a second opinion.
Very glad I did.
I was told it was my age and that I had osteoarthritis even though my bloods were not right!!
The problems started with a severe pneumonia accompanied by hugely swollen legs and feet with the now familiar rash, etc.. As the flares went on over a period of years accompanied by breathlessness, rash and swelling of my legs and feet, acute fatigue, muscle and acute joint pain, palpitations, bleeding PR, nose and haemorrhages in my eyes but was told it was psychological and I was having panic attacks. CBT was recommended. Eventually I took my rash to a private dermatologist who suggested vasculitis, then I was diagnosed.
Fibromyalgia and general age issues by GP. Frozen shoulder when I made a private appointment with a rheumatologist at my GP 's suggestion. Trapped scalene nerves by a physiotherapist. Too much time hunched over a computer writing books by me! Four visits to A and E when I finally collapsed. Diagnosed on my second admission when they realised I had no pulse or BP in my arms.
I have Cerebral Vasculitis and my local hospital after 2 admissions diagnosed me with a simple headache twice?
Did you have vertigo? Second to the carpal tunnel I started with this, a sharp pain in my head, the side of my face neck and arm went numb. The constant vertigo and severe pain in my head lasted a week, mri normal have been diagnosed with migraines. Only now after urticaria are other causes being looked at.
Diagnosed with idiopathic urticaria or SLE but most definitely not vasculitis.....
I had that idiopathic urticaria diagnosis too
Twice diagnosed with rheumatic fever before being correctly diagnosed with WG.
told I needed hip replacement!
Sinusitis and then TB
Apparently I was alergic to our cat and had gout!
Otitis Media due to a 'nasty' virus from California !! Wrong !!
I went deaf and they sent me for speech therapy!! Then had sinusitis and x rays but took kidney failure to be diagnosed with WG
Diagnosed sinusitis initially with involvement from E.N.T. specialist .Despite C.T. scan and blood works no confirmation of W.G. Diagnosed following investigative op and biopsy. Heamatologist had suggested ANCA blood test which proved postive .This was after 6 months of severe symptoms and illness . In comparison to others this appears quite quick .
I was labelled as neurotic, depressed etc for years
They told me I had an ear infection, then flu, chest infection, carpal tunnel, Bells Palsy, also thought I might have Parvo Virus but really they had no idea whatsoever until a blood test following a transfusion looked like going into renal failure the Consultant thought I might have WG
I was told I had sinusitis by G P. various locums said I was allergic to our cat/dog. My sister who is a nurse eventually got on to the G P and insisted I go to hospital.(By this time I had been bed-ridden for 2 mths) Once in hospital was diagnosed within 3 days but had severe kidney involvement and was told I had been admitted just in time.
I was initially told by my GP I had a virus that was hanging on. After further visits and an awful set of blood results I was admitted to hospital as an emergency case. The hospital (who didn't have a renal unit) diagnosed me with a bad kidney infection and put me on a course of antibiotics. After the course of antibiotics my blood results were no better and I was referred to the QE in Birmingham where MPA was finally diagnosed.
I was diagnosed quite quickly with ME/CFS, but my symptom pattern changed, to be more like MS, and I was increasingly concerned I had something more dangerous that needed aggressive treatment and fast. I had to fight for new tests. Even the hospital consultant I saw assumed the ME diagnosis was right. Lucky I fought my case, or I'd probably have died.
was told i had a common cough, then a chest infection then sarcoidosis (?)
and finally told by a doctor who came to my house (i had no energy to move and all my joints ached) to take some paracetamol and i should be better in a few days, this was just after he was told by my wife that everything i tried to eat or drink i would vomit back up.
next day was seen by a lung consultant (appointment was supposed to have been a week later) and he put me straight in hospital as he recognised that i had vasculitis and finally blood tests were done and my kidneys were failing fast they were down to 11% on admission to hospital.
next day was moved to a different hospital where they found out it was WG and treated me and are still treating me (i have to go for check ups every 4-6 weeks. is this normal??)
that was 2 years ago in june.
John was diagnosed with WG 11 years ago and up until late last year saw his consultant every 12 weeks now he sees him every 16 weeks. John has blood tests every month. Even if a person with Vasculitis is in full remission (no drugs at all) they must never be signed off from their consultant even if they only see them once or twice a year. It was a Respiratory Consultant who diagnosed John's WG after a biopsy. He saved John's life.
take care
Susan
thank you for the info about seeing a consultant, that has put my mind at rest about seeing him every 4-6 weeks now
@Ulysses31 your story almost mirrors mine, especially the kidney part. I have only been diagnosed since April 2011 though.
I used to see my consultant every week following discharge from hopsital which has gradually come down to every six weeks at present. I have blood tests done every visit and am just really pleased they are keeping such a close monitor on me 
I had symptoms some 10 years prior to being diagnosed with MPA. After about 5 months of blood and other tests I seemed to recover and get back to normal.....so it was left as a 'mystery!!'. 10 years later it hit me like a sledgehammer again and after 6 months and a kidney biopsy, the true diagnosis was made. I live in Australia and our medical services are generally terrific....I guess that I was just unlucky the first time.
For 3 months I was diagnosed as having a migraine, even though I, or anyone in my family, had never experienced migraine before. I had no light or sound sensitivity common to migraine, or relief from migraine painkillers, just loss of sight and unrelenting, mind-splitting head pain.
I was diagnosed with Glue ear due to a prolonged deafness and was booked in to have grommets fitted on the Wednesday. I was admitted to hospital on the Monday very close to losing my life.
I was 29 at the time.
Being in west Africa at the time I was misdiagnosed as having Malaria and was treated for Malaria for 11 days before being repatriated.
I was treated for sinus, red eye, aching joints over a period of 18 months to 2 years before being diagnosed with WG having been rushed to hospital with renal failure.
In August 2006 I started suffering with a 'frozen shoulder' which did not respond to any treatment. Then in January 2007 it was sinusitis.By June, and 3 courses of antibiotics later, I was hospitalised for a week with suspected pneumonia, where they discovered my blood count was very low, gave me a transfusion, and sent me home to await 'camera' tests. 2 weeks later I was re-admitted with extreme joint pain and a rash. I was diagnosed with WG the same day.
After 6 months of tests and no diagnosis, was referred to a Neurologist as the Rheumatologist didn't know what else to do and the appointment would not be for a further 6 months!! As I live alone and my daughter lives in Hampshire she would not leave me so took me back with her and got a private appointment with a Neurologist ( I do not have private health care) this was proved to be the best money spent, he within 1 hour had made a decision, but would not say what it was until tests had been done with his colleague the Rheumatologist, cut a long story short I was admitted into hospital as an emergency and as a NHS patient diagnosis was confirmed as WG treatment started immediately IV steroids for 5 days, followed by cyclophosphmide IV for 6 months. The ongoing treatment is superb and I have long since relocated to Hampshire, where my condition is constantly monitored and treated accordingly. Had I remained living in the Midlands I am not sure what the state of health would be like today.
I was living in France, and I was treated for a sore throat, chest infection, broken rib (because of the pain) went on for nine months untill I returned to Scotland. After one month here got diagnosed with Vasculitis MPA.
After two years of seeing different GP's and then consultants, I was diagnosed with Chicken Pox, Follicle infection, Scabies, Chronic migraine disorder,,and it was't until I went to see a neurologist about something completely different who noticed the rash and asked a few questions who then said he thought it was vasculitus and referred to both a rhuematologist and a dermatologist who biopsied me and both came to a diagnoses of WG and I am just four days ago of five intensive infusions of Chemo/merzine and that old favorite Prednisalone which my doctor tells me I may have to have done yearly as well as staying on my current doses of Prednisalone Azathioprene and fexofenadine, trouble is we don't know if the infusions will work for another six weeks so as it is now I am still suffering
All of your stories make me want to weep and rage in equal measure. Weep for what we have all been through and rage against a medical profession who still "get it wrong". Hopefully things will improve in this respect. I'm praying it will.
I was diagnosed with CSS (with heart complications) in Sept 2008 after (at least) a year of being dreadfully unwell beforehand. To cut a vey long story short, I was saved from death (I am not being melodramatic - my heart was failing rapidly) by a wonderful CARDIOLOGIST who diagnosed me. But for his "thinking outside the box" I would not be here today.
Funnily enough, and I DO think it's funny (you have to find some humour in it all or you'd be done for!), whilst in hospital nearly popping my clogs, they thought my symptoms were gall stones and were about to operate on me!?!?
One Angiogram later, some more scratching of heads and more deliberation and the puzzle was solved.
Since then I have had another two stays in the "big house" (hospital) due to serious complications. But I'm not about to throw in the towel and let " IT" take over my life.
I might have Vasculitis but it doesn't have me! 
My 19 year old daughter was treated for Vertigo for 7 weeks before being diagnosed with the extremely rare-Susac syndrome
I was diagnosed as having chicken pox, and then 'chicken pox with complications'.
Diagnosed and treated for Episcleritis by blinkered Opthalmologists until the Vasculitis caused a heart attack. Like BerkshireBird above I have the Cardiologists to thank for calling in a raft of different consultants (including Rheumatology) who eventually made a correct diagnosis and started treating me successfully.
I was diagnosed with a sinus infection and a virus shortly before a massive flare of joint pain caused my GP to get the blood tests that rapidly got me diagnosed by a rheumatologist.
I was not misdiagnosed as such but it took 3 months to get a diagnosis after continuous blood tests and more and more symptoms appearing, fatigue getting worse, and then finally being admitted to hospital where I was diagnosed quickly. I was told by the paramedic to go to hospital as GP's only check one symptom at a time and in hospital they do the whole lot. Very good advice and saved me!
I was treated by my GP for 3 months with flu, but quickly referred to eye casualty department when I lost the vision in my left eye. Initially diagnosed with Giant Cell Arteritis/Temporal Artertis by Opthalmology Department but biopsy and further blood tests showed something more serious going on so I was referred to Rheumatology Department and diagnosed with MPA within days.
Husband was diagnosed with non small cell lung cancer, had half a lung removed only to be told it was not cancer but wegeners granulamatosis 2010
was told i had RA 5 months before i was rushed to A and E and diagnosed with WG had been to A and E 3 days before also cos i was in a lot of pain with cold sores and ulcers in my mouth and had several big black scabby lesions on my face ears and chest area and the doctor stood at the other side of the cubicle and diagnosed impitigo, which even I knew it wasnt that she prescribed co coldamol for the pain and a cream for the 'impitigo' which i didnt even pick up, 3 days later i was rushed back to hosp in the back of an ambulance cos i woke screaming and delirious and my GP refused to come out to see me so my partner phoned 999 instead my kidneys were failing but the a and e doctor diagnose wg straight away.
For years I was told 'growing pains' and even just attention seeking by one GP! Then they thought the rashes/swelling were just a series of infections!
x
Over 20 years ago I was diagnosed with varicose veins and told to walk a lot despite the pain I was in. When I eventually self-referred to a private cardiologist he immediately diagnosed vasculitis and threw his hands up in horror about the walking! God knows what damage that must have done . I had 2 biopsies done privately but was given no medication. I discovered some time later by accident that although I had been taking minocycline for some time I had developed this hypersensitivitiy to it. This was because I stopped taking it! I told my dermatologist that I thought that minocyline was responsible and he was very sceptical. I started taking it again and the blotches and pain came back in my legs. He then accepted it. Had no problems since except later this summer with extreme pain in legs but no blotches, when it has been very hot. Assume that there must now be damage to my veins and it's probably because I am in my late sixties. Will have to see my GP but not sure he will have any answers!
I had had a diagnosis for asthma but, when my symptoms worsened ,my GP told my husband it 'was all in my mind'. He called in a Consultant, who saw me at home as I had severe bowel problems, great loss of weight and difficulty walking...but he had been told I may have anorexia nervosa. Fortunately, after a week of tests in hosp they realised I had something more complicated..,This was 30 years ago!
My son was told it was an allergy rash as he has had problems with allergic reactionsto various things before
It was suspected that I had cancer and I had thorough examinations and x-rays----sometimes twice as they could not believe the clear results they were getting
the skin problems started with being dx chillblains, excema, dermatitis, too much washing! standing too long in bare feet, stress,anxiety, then the muscle and joint pain started - getting older, tendonitis, Dequervain's recommended to have joints injected with steroids. fatigue, flu like symptoms, unable to drive had to stop working - repeat virus infections, post viral symdrome, bird flu!!!! Polymyalgia Rheumatica, stress, stress and more stress finally ended up in A&E with collapse and fits in hosp 3 weeks. Cancer, HIV on to Rheumatologist - bechets, SLE and finally vasculitis with Ryenaulds.
One of my first ever symptoms was Scleritis in both eyes. at the time I was sent to Kings College for further tests and was given the diagnosis of WG later on. So my answer is 'NO'.
I was initially diagnosed with sinusitis by the many doctors at my G.P. surgery, with recommendation to just take Ibuprofen at the maximum daily dose, which I was on for weeks. It wasn't until I suffered a haemorrhagic stroke and was rushed to hospital that a true diagnosis of WG was made.
I have since been told that Ibuprofen thins the blood. Surely that, combined with the inflammation of the blood vessels and the resultant higher blood pressure, must have had an impact on why i had the haemorrhage.
I was told i had wegs or lupus but more probably lupus. 3 years later i was diagnosed with Wegs
gosh isn't the internet a wonderful thing that we can all share our experiences and we can all see how bad it really is and that we're not all losing our marbles after all like some medics would have us believe! A lot of the above is true for me too and even after I was eventually diagnosed with WG other medics caused me problems as you do tend to get passed about quite a bit. Then when my husband was also diagnosed with WG later (with hindsight he'd been having symptoms long before too and diagnosed with asthma and psoriasis) he was intiailly diagnosed with shin splints for the pain in his legs, burst ear drums was due to an infection, mouth so full of sores his tongue cracked down the middle and couldn't eat was an infection (given Bonjela a gel for mouth ulcers) and the night sweats and big weight loss in a matter of a few weeks was something he should take a sleeping pill for, coughing up blood he should try not to cough so hard like it was his own fault, and many other ridiculous things too and was on the verge of collapse but luckily I insisted they test his blood (I actually refused to move from my chair until they did as I just knew there was something wrong!) and after him collapsing at home and me crying in the doctors insisting something was done they initially refused to come out but when they got the results of the blood test from the hospital as I insisted they did he was rushed to A & E. didn't expect for it to be WG the same as me though (yes they have checked the diagnosis) that was a shock. He now has damaged lungs and numbness in his legs from the nerve damage. Thankfully I got him to a much better hospital.
To be fair, my doctors were looking for RA but were very thorough and completed all their tests before making their diagnosis.
I was diagnosed with erythema nodosum by my GP and six weeks later saw my rheumatologist who diagnosed rheumatoid vasculitis.
Nina
I thought it was sinusitis. When it got worse on antibiotics my GP thought it was swine flue. Eventually I was admitted to hospital and they were brilliant; WG was diagnosed the same day and sinus biopsy later confirmed the diagnosis.
Didn't know whether to laugh or cry reading all this. I really need to sit down and type out 'My story so far...' I haven't got a concrete diagnosis of vasculitis yet but I have diagnosed myself following the suggestion it looks like vasculitis following my last stint in hospital recently.
So far for me it's been: panic attacks(!), anxiety(!), anorexia(!), exercise addiction(!), pleurisy, sinus infection (for 7 years solid), tonislitis (had tonsils out 4 years ago, age 30), ear infections from too much swimming, kidney stones, over exertion(!), heartburn(!!!!), endocarditis, ovarian cyst, post viral syndrome, exercise induced asthma, brain tumour, MS, kidney tumour, dermatitis, eczema, 'high achiever syndrome' (WHAT on earth is that)?! Some Drs seem to have a real issue with the fact I am a competetive triathlete and it's all down to 'training'...
Then Guillain Barre Syndrome...which sort of set me on the right kind of road....
i have just been diagnosed with vasculitis seems like i have had it for the past year half in the time i have probably trained the hardest in my life from doing a marathon and half marathons and boxing 3 to 4 times a week, i think the training has kept me going
i was diagnosed with crohns
Initially told it was not WG, after ct scan and ANCA neg., but diagnosed after biopsy.
had joined a jogging club in the past 3 months prior to illness. Developed a few joint pains so took a few doses of ibuprofen over the next couple of weeks. Episcleritis( red eyes) two episodes I thought that the ibuprofen may have triggered the ensuing symptoms. Spent 5 days at home with horrific rash( blisters really all over my arms legs and face ) and joint pains - given anti histamines by GP. Emergency admission to hospital with blood in my urine and joint pains after this,. Diagnosed with mycoplasma infection . no one would listen about the haematurea, they just wrote me off as a menstruating female despite my protestations that my period was finished. Didn't respond to treatment Was having repetative fevers and shivering enough to shake the whole bed. .After 10 days in hospital in which I rapidly became much worse and couldn't even walk the length of the ward without collapsing.. I telephoned a friend who is a Consultant doctor in Metabolic diseases and he recommended an autoimmune antibody test and talked to my hospital consultant on my behalf. When the result of this came back I was seen by a renal consultant immediately was put on methyl prednisolone IV was transferred to the regional renal unit that same evening. MPA diagnosed with acute renal failure. There is so much ignorance out there ! It is really scary when you know that they have no idea what is wrong with you and you feel so ill.. The good news is that my GP was able to diagnose another of his patients with vasculitis and do appropriate tests and a quick referral to a specialist because of the knowledge he gained from my case.
I was misdiagnosed with a possible Brain Tumour, possible TB, Chronic Sinisitus. It was only when my eyes started to melt that Wegeners was discovered!
Oh and I forgot Chronic Fatigue and weight loss.
Only when I went into hospital suspected TB than pneumonia. But also contracTed MRSA in between too. GP just said it's the flu and fobbbed me off. Which is sad because I couldn't explain the pain I was going thought for for 4 months straight.
The last diagnosis I received before Vasculitis was Measles and gout. Many more prior to that, CFS, COPD and bilateral Hearing Loss being for the major part then lots of unexplained episodes.
Regards Charles
My Mum had what we now suspect as grumbling symptoms for several years. Total exhaustion, unexplained aches and pains, chest infections that would not clear. Later symptoms were headaches, gout like pain in hands and feet, pins and needles in hands and feet, tingling in the tongue, tiny blood vessels rupturing under the tongue leaving small red dots which I now presume is similar to a vasculitus rash? Then drop foot, vision problems, seizures, tia stroke and kidney failure along with pneumonia. Three weeks on renal support and the local hospital had no idea what was wrong, she was transferred for dialysis where after some tests and a kidney biopsy non specific vasculitus was diagnosed. So no mis-diagnosis as such but only diagnosed when kidney failure was life threatening.
PMR
Frozen shoulder and flu
Initially diagnosed with Sweet's Syndrome.
Hypereasinophilia syndrome
First I was told I had a cold and chest infection, then I was informed I had cracked rib.
I first had severe joint swelling, pain and rashes about 3 years ago. Went privately to see a rheumatologist because of 6 mth wait on NHS and was diagnosed with pallendromic rheumatism and prescribed prednisolone for 6/12 mths along with hydroxolorochine which seemed to work initially. After 12 mths or so and by then taking just the hydroxochloroquine, other symptoms occurred - inflamed gums, had facial pain and unbearable headaches so was treated with 3 lots of anti-biotics for sinusitus. Then followed hearing loss in both ears and was sent for a CAT scan which showed a blockage in tube behind nose so was referred to ENT specialist. He carried out sinus op to rule out a tumour so that he could treat what he thought were glue ears. He said the biopsy had 'luckily' only revealed inflammation so then went ahead a few months later to insert grommets in my ears which unfortunately fell out after 6/8 weeks. By this time I was in awful pain again in my joints, chronic fatigue, loss of appetite and a hefty weight loss! In April this year I managed to get an earlier than prescribed appointment with my rheumatologist who immediately gave me steroid injections in some joints, noted my numerous symptoms, and took blood for testing and a urine sample. It was some 6/7 weeks later I was contacted by my rheumatologist to see him a.s.a.p. for test results (by this time as well as painful joints I had developed peripheral neuropathy in my lower legs and feet). The diagnosis was Wegeners GPA and I was immediately started on 70 mg prednisolone per day and regular cyclophosomide infusions. The prednis is being reduced gradually now down to 12.5 and just 2 more infusions to go. I am so grateful for the diagnosis and am feeling so, so much better. The numbness has improved a little and hope it wil continue but unfortunately I have had to be fitted with hearing aids and am again waiting to see the ENT, but wonder where I would be now without the diagnosis.
Pneumonia, severe sepsis and cellulitis - all of which were perfectly reasonable diagnoses on arrival at hospital, given the symptoms. And the fact that antibiotics seemed to work. When it happened 6 months later, then again 6 months after that, (following 6 months of tests for every auto-immune disease the consultants could think of), they saw the pattern and that no 'bugs' would culture, and sent me to the city hospital where rheumatology and cardiology argued about where I belonged and thankfully the rheumies won! Also diagnosed with ulcerative colitis and crohns this year, and I gather they're real, not vasculitis imitations of them.. Pred working for all of it so far
My partner was misdiagnosed with Myleodysplastic Syndrome( I think that is how it is spelt MDS) before he was diagnosed with GPA although they were not 100% sure that is the type of vasculitis he had. He took six years to be diagnosed properly with a change of hospital. However, he was very ill in 2002 and they could find nothing wrong except an unidentified inflammation. The doctor left it at that, so in my opinion Gareth had vasculitis for a good ten years and maybe 15 years undiagnosed. It gradually built up its power over his body.
I was diagnosis with lupus sle Oct 2012 after 6 months of treatment was told my kidney were failing and do not have sle that i had WG GPA when I did some research i found a lot of cross over between the ,,2 conditions WG can mimic Sle my rhemo ,& Gp and nephrology have been very supportive over two years
I was diagnosed with Samters Triad
My wife was misdiagnosed with RA in Sep 2011-treated with Methotrexate which resulted in Kidney failure in April 2012-and 5 weeks tests in hospital where she had a DVD from lying in bed so long and kidney biopsy then two days later Subarachnoid Haemorrhage ! and shingles three times !
GP diagnosed me with Urticara, Dermatologist diagnosed me with Nodular Prurigo. Was treated with anti histamines - which did nothing. Then steroid ointment and emollients. Steroid ointments made me itch more although the emollients did help somewhat. Rheumatologist said it was my immune system causing my rash, but didn't decide it was vasculitis until after 28 days of treatment: 40mg Prednisolone, 20 mg Leflunomide. Then added in 20ml MTX injections. Also had 5 methyl pred infusions of 1,000mg each. Still itching with a massive rash. Toes are numb and painful, with pains in various joints that I'm not sure are RA or RV. Very confused. Oh yes, forgot the sinus problems and nasal crusting/bleeding and pain/bleeding in back passage which might be haemorrhoids, might not, as I sometimes get pain with no bleeding or bleeding and no pain!!
I had polymyalgia rheumatica for many years before it flared in Oct 2013 and turned into GCA. My GP started me on 15mg of prednisolone reducing by 2.5mg per fortnight until my hair fell out and I was ringing local GPs to ask if I could be taken on their list and why this was. I lost some vision and some hearing (and had 5 months of intense and extremely worrying headaches). I was sent to 2 appallingly abusive consultants who both covered up for the misdiagnosis by the student GP (a registrar from the local hospital who had not passed her GP exams and should have been in supervision). I changed my GP and my new GP will only diagnose the PMR and will not refer me. During this time I was diagnosing myself and also needing to prescribe for myself "What sort of treatment do you think you should have then?" I can hardly walk, especially uphill, and I have diagnosed myself with claudication. What I think is heart pain has been diagnosed as gastritis. I have suffered with deep long term depression and anxiety and am surprised I have not committed suicide.
I have a large number of symptoms of GCA but I still only have a diagnosis of Polymyamgia Rheumatica bar one consultant. He was prepared to say I had 'arteritis' but because I had been misdiagnosed by my GP as having polymyalgia only, and put on a very minor dose of prednisolone which was very rapidly reduced until I had a serious flare. I made a complaint because I lost some eye sight and also some hearing; I also suspected arteries in my legs were affected. and I had heart pain that I was told was 'gastritis'.
The behaviour of this consultant was very abusive (threats, accusations, shouting in my face). I was not prepared to be bullied into signing the consent form that Friday evening to have a biopsy the following morning. I had been taking prednisolone for 5 months. Since I refused to see him again, I was sent to the person who trained him. My pulses were tested and he told me was in remission and to rapidly reduce my dosage (my CRP was 62 that day) so I had a second flare. I changed GPs but they refuse to refer me to another consultant. So after 20 months, I'm still waiting for a proper diagnosis.
GP suspected GCA, given Pred urgent appointment with Rhuemy made. TAB negative told didn't have GCA it was Neuropathic pain and prescribed Pregabalin. 4 months later (after much pain and many appointments) GCA of Aorta and Subclavian diagnosed by PETCT.
Started with 2 x ear infections requiring hospitalisation in 2008/2009 then depression. Diagnosed with Guillain-Barre Syndrome in 2010, followed by another ear infection requiring hospitalisation in 2011. Had periods of feeling terrible with worsening neuropathy and despite a positive P-ANCA in 2011, this was described as of unknown clinical significance by a regional specialist in immunology and was told I was suffering from Guillain-Barre residual effects by a regional specialist in peripheral neuropathies. Eventually lost my management job in the NHS at 41 in 2011 and spent the next six years feeling terrible until in 2016 I again developed worsening neuropathy. After seeing a fifth different neurologist, she requested a sural nerve biopsy and another vasculitis screen. In November 2016, I was finally diagnosed with ANCA-associated SVV and have just started treatment. The neurologist still maintains I had GBS in 2010 and have developed vasculitis since....
Yes 4 strokes before any diagnosis or treatment
Fibrom
