How many different doctors/specialists did ... - Vasculitis UK
How many different doctors/specialists did you see before being diagnosed with Vasculitis? Please leave any appropriate comments.
John_MillsVolunteer151 VotersPlease select one:
It took 2/3 years to get a diagnosis, and I’m sure I’ve forgotten some of the doctors - and the tests.
But - all five doctors in my GP practice, 2 or 3 out of hours doctors, a private rheumatologist, an optician and ophthalmologist, a physiotherapist, and someone who ordered me a barium meal,and a range of X-rays. Oh, and a private doctor who uses the Bowen technique. Finally, 4 emergency visits to A and E where I was eventually diagnosed with Takayasu’s by a vascular surgeon.
They all tried very hard, and some were a lot more sympathetic than others, but the range of symptoms and the way they came and went defeated them.
At least 7 and that was before I put in a coma . so there may have been more
I was extremely lucky my Consultant knew what it was early on. He had come across it previously and was correct 
I was treated promptly in relative terms which saved a lot of suffering ! I am very grateful for his knowledge and help
After my treatment for Breast Cancer, I developed an awful and very itchy rash up both legs and back. My GP tried various creams and antihistamines, then referred me to a Dermatologist, who after a punch biopsy, diagnosed Nodular Prurigo and gave me yet more creams, including steroid creams. But wouldn't give me any anti inflammatories "as I had had cancer"! At my next RA clinic, my Rheumy took one look at my rash and said "that's Vasculitis" and putting me on 80mg Pred and 1gram infusions of Methylpred, and after a few weeks added in MTX 7.5mg tablets. I have since had 2 infusions of Rituximab, and Im due another next spring.
It took almost 9 years for me to get a diagnosis. The GPs were not sympathetic and the consultants mostly unsympathetic also, cardiology, rheumatology, GI, respiratory, dermatology, etc. I felt that a more positive and enquiring attitude from the GPs could have helped but I seemed mostly to be disbelieved despite a frequent very obvious rash and episcleritis. I do see that such a wide variety of symptoms with no apparent connection is difficult. Eventually a proposal of CBT left me so angry I made private enquiries and within 3 months vasculitis was suggested by a dermatologist and confirmed at St Thomas's Lupus clinic from where I was transferred to Cambridge.
One doctor, pediatric- 2 visits. He suspected on first but hoped it was something else (initially it was just the rash on legs)- he told us to return if my daughter experienced any abdominal pain. Within 48hrs we were back at his office with rash and severe abdominal pain. She was 19yrs old. She was diagnosed with hsp vasculitis.
I'm well aware that I am lucky in this respect, I went to my GP 3 times in 3 months with exhaustion, night sweats and generally feeling rubbish on the 3rd visit there was a bit of a stand off as he told me that my white cell count was high and that I would feel better if I lost weight, there was an argument at this point and he agreed he would carry out more tests.
He did the ANCA test and found there was blood and protein in my urine, he spoke to royal Berks hospital, I was seen by them within 5 days for a kidney biopsy, which showed nothing! But within a month I saw Dr Flossman as my symptoms were worsening with eye involvement and nose problems, I started on the avacopan trial.
My son was diagnosed with Granulomatosis GPA 4 weeks ago..he was treated for 2 years previous with asthma but his symptoms just kept persisting.he was so breathless all the time, ..he’s since had 16 stents in less than 11 months,numerous amount of visits/stays in London hospitals 3 different consultants & a professor before they decided it was something else...he’s on steroids & Azathioprine 150mg...I’m just hoping he gets some piece from this disease it’s been a tough year!!!
3 GP's and 2 hospital doctors over the space of two and a half months. I count myself lucky in getting a fairly early diagnosis, even if the journey getting there was both disappointing and frustrating.
4 gps a rheumatologist, a neurologist and a dermatologist who gave me a skin biopsy showing vasculitus and sent me home with a print off from google and the Canadian vasculitus website and a prescription for antihistamines!
GP said I had chilblain and told me to wrap up one winter. I insisted on blood test the following winter when my toes started swelling on top of itchy rash on my hands. Then got lucky with a visiting doctor who had just been to a Vasculitis conference and suspected Urticarial Vasculitis.
My GPA started off as a persistent cough. After a run I would have a coughing spasm. I had several chest x-rays which showed nothing. After 18 months I was referred to a chest consultant. On my second visit as things were starting to go downhill I mentioned that I could feel something strange in my chest when I jumped I up and down. He ordered a CT with contrast, but by the time I waited a couple of months for it I had night sweats, severe muscle pain in my legs, weakness, lethargy, hoarseness, blocked ears etc.
To be fair, once the consultant saw the results I was admitted to hospital the next day and after a week of intensive tests and poking by a variety of consultants we had a diagnosis.
After the chest consultant saw the CAT scan he told me that it was either a rare disease or a rare presentation of a more common one, but he didn’t think it was cancer. I was just so relieved to have it acknowledged that there was a concrete problem, after months of ineffectual treatment by the GP.
My most vivid memory of the whole process is sitting in the GP’s office telling him “Every month for the last 6 months I’ve been here with a different complaint, but every week in the last month I’ve been in here with some new complaint”.
I often think a relatively cheap CAT scan would have saved the NHS a fortune in drugs and treatment.
I knew what was wrong with me, as i had PAN previously but i had to go through the process
GP and ENT consultant
I was two weeks in acute medical in hospital with numerous almost daily blood tests and every kind of scan. Was sent home and then the PET scan I had showed I had GCA - it was noticed by an Icelandic Consultant over here for three months.
I had been seeing my GP, for urinary tract infections and been on 4 short courses of antibiotics for just over a year before I had blood tests. The GP rang me and told me to go straight to A and E.
They sent me onto the medical assessment unit. After one week I was transferred to the Renal ward. Here my specialist performed a biopsy and diagnosed MPA. I was immediately treated with Cyclophosamide and micophenolate mofetil, and prednisilone and this specialist continued seeing me for nearly four years until my kidney function dropped to Gfr 8 and I started dialysis. After nearly two years on PD my husband gave me a kidney , but after two years the transplant has failed and I have just had a PD catheter refitted. This unfortunately has moved and is overlying the transplant graft. I am awaiting a date for 're-insertion. My Gfr is 7.
So far, after seven years I have had no flair of the MPA., but the initial kidney damage was significant.
Regards Tashe
Hi Tash I am surprised your consultant who looked after you for 4 years did nothing further when your kidney function seemed to be dropping... where are you seen and who looks after you? Please write me an email John.mills@vasculitis.org.uk
Ankle, knees both a different times, brain scan, ENT, rheumatology, A&E 5 times one told me it was a tummy bug. Treated with antiinflammatory drugs for 2 years. I almost forgot the skin treatment, that adds 2 to my number!
Awaiting rheumatology appointment when my sinuses virtually exploded. Treatment was exceptional once identified but it was a long hard journey.
5 GPs, an A&E doctor and then the renal consultant who organised the kidney biopsy and the conclusive diagnosis. This was all within a 6 week period.
GP referred me to ophthalmologists who were confident then baffled then just resigned. GP said he didn't want to investigate other symptoms as "treatment for autoimmune disease isn't nice" but reluctantly referred me to rheumatologist as non-urgent case. Meanwhile he put me on oral cancer fast track because of sore mouth, got a tongue biopsy, not nice. Then I started coughing blood so urgent referral to chest clinic. Finally rheumatologist (who had cancelled twice so delayed by nearly 2 months) did ANCA test & urgently referred me on to Addenbrookes, was on cyclophosphamide infusions within a month. I have GPA.
3 G.Ps, 2 x A&E, out of hours G.P, 2 different rheumatologists, urologist, neurologist. I didn't give up pushing and it was a close call in the end as I had renal failure, lung damage, joint involvement +++.
Whilst visiting my daughter I was rushed into A and E complaining of severe chest pains. After deciding that I had not suffered a heart attack, I was transferred into the care of a chest consultant as pleurisy was suspected. However I was discharged as suspected flu. The condition of course did not get better and a month later I was admitted to my local hospital where the consultant decided on an ANCA test. You can guess the rest....
I was nine months before diagnosis. Was seen by two GP'S, a rheumatologist, both an ear nose and throat consultant and pulmonologist privately before being admitted to two hospitals before being diagnosed Wegeners by a renal doctor.
I had no symptoms, but at GP annual review for coronary heart disease my blood test showed a possible kidney problem.
Referred to consultant at local hospital where renal services were contracted out to another hospital. Consultant reviewed further blood test which showed ANCA positive. As his "home" hospital renal department included vasculitis specialists he was aware of such issues. Referred for biopsy, result of which led to immediate appointment with vasculitis specialist and confirmation of MPA.
So -
Lucky that I had coronary heart disease, otherwise I would not have gone to my GP.
Lucky that renal consultant was well aware of vasculitis.
However because of NHS waiting times the process was slow - 4 months GP to consultant, 5 months first consultant appointment to biopsy. Then much quicker - 1 month biopsy to first vasculitis treatment.
If I had any prior knowledge of vasculitis I would have kicked up a fuss about the waiting times, but of course I'd never heard if it before.
Not sure how many doctors seen before diagnosis as I was in hospital for 2 weeks while tests were done. To me they seemed a mishmash of unrelated tests. I had tests on urine samples, numerous blood tests, scans and X-rays. I was discharged with no definite results and referred to hospital in Oxford for a pet scan. This showed up as vascilitis. I was immediately treated with steroids and aza (plus numerous other things for side effects).
I was very grateful to my GP as he referred me to A&E straight away when I went to him with splinter haemorrhages. Could have been so much worse!
I was lucky i was diagnosed within 2 weeks at St James Leeds and was given appropiate treatment quickly.
I was diagnosed relatively quickly with GPA but then waited on steroids only for about 4months for other treatment which was azathioprine for a year.
I was already under a rheumatologist for something that was thought to be completely unrelated to the chronic symptoms I developed later. Think I saw all the GPs in my surgery for about a year then eventually sent in to hospital where a doctor there reluctantly did a CT scan which revealed a problem/blockage in tube at back of nose. Sent to another hospital for exploratory operation which revealed 'just inflammation' and a further procedure carried out to insert grommets to help with loss of hearing. Still continued to feel completely unwell and in a lot of pain for another 6 months until I saw the rheumatologist I had originally been referred to (privately I may add because of such a long wait on NHS). It was he after hearing all the details of the previous 6/12 months or so who 'joined up all the dots' and diagnosed Wegeners GPA.
Actually, that's incorrect; it's only 2. My GP was first to spot an anomaly in blood work after I'd come in; he referred me to kidney consultant at UCH, who monitored till another symptom showed up. Same Dr ordered a biopsy, which showed up Renal MPO/Anca. He was/is affiliated with London Royal Free & i've been under their care since. I was very lucky.
Was diagnosed with IBS and told I was anxious & it was depression despite me going back so many times. I HAD to change Doctors 4 times prior to be taken seriously. I’m lucky to be alive but my kidneys & lungs are badly damaged due to late diagnosis
I HAVE answered this poll, as accurately as I can, however my answer might be a bit mis-leading. I first collapsed, just over, twenty years ago in Central London. I was taken to University College London Hospital (UCH), were I remained VERY ill and undiagnosed. Because UCH is a large Teaching Hospital, there were Doctors/Consultants 'Passing Through' continually. It was one of these Doctors who actually recognised my Condition. If it hadn't been for this, completely unknown to me, Doctor I would not be alive today.
My story sounds like all these others... Doctor after doctor. My rheumatologist said she "had no idea what was wrong with me" but I had to diagnose myself & had to "force" her to conduct blood tests that I knew I needed. Originally, as I had EVERY symptom, I self-diagnosed as having Myasthenia Gravis for a couple of months. But blood tests I demanded were neg for MG. By now I was sure I had Rheumatoid Vasculitis but I faced a 6 month appointment wait with the only Rheum/Vasc Doc in my Kansas City area. Meanwhile both feet dropped & I ended up in a wheelchair waiting... Just waiting. Even after that first appt I waited many weeks for nerve/ muscle biopsies due to screwups with the Kansas University Hospital. Only after the biopsies could I DEMAND Rituxan. With the first infusion, the disease course was stopped but I still have a dropped foot, a leg with neuropathy & my pleasant life as an Appaloosa breeder is in ruins. In 2016 I must have had 50 Doctor appointments plus 3 Hospitalizations. Without my research-- esp on this site!-- and my demanding Rituxan, I'd have been long dead!
