How long did it take from your 1st visit to ... - Vasculitis UK
How long did it take from your 1st visit to the doctor complaining of symptoms to getting a proper diagnosis & treatment. Please comment
is there any geographical bias to being quickly diagnosed John??
Evidence does suggest that those referred to multidisciplinary centres are more likely to be diagnosed early and given appropriate treatment and experience better outcomes. GPs are still a problem as they will only come across 1/2 cases in their whole working career. I am the only case of GPA at our local practice and my practice is a large practice and covers a wide rural area.
Think my GP is exactly the same - I am his only Vasculitis case and I still find it difficult with communication about my care from the doctor to consultant and as I’m newly diagnosed, I find every little change very scary and very emotional which is the part of this disease I find difficult....
Thank goodness for this web site which my consultant told me about- I find it helpful and informative....long may it continue!
I consider myself very fortunate in seeing an ENT consultant who was experienced in vasculitis and immediately referred me to my vasculitis consultant
I am still massively frustrated by my inability to achieve diagnosis and/or treatment for respiratory symptoms and the refusal of Addenbrookes to routinely give my reports and test results to my GP or to myself. Only Professor Jayne has been helpful but I do not feel I can keep asking him to arrange this. I don't know how to deal with it. I have MPA so lung problems are not unusual. My respiratory appointment has just been put back from early May to 31st August.
I fell ill in 1998 with acute pneumonia but was not diagnosed until 2007. Because of the variety of symptoms my GP surgery said I was overanxious about my health and required psychiatric help and CBT to overcome this. I decided to go privately to various specialists in London and was diagnosed within two months by Professor David D'Cruz at St. Thomas's. I do now have a very good young GP who is also frustrated by the lack of information.
Interesting comment to read regarding mental health assessment. I had the same experience as I begged a doctor to please help me. Now I get extremely anxious when I need to visit a doctor
I have to agree that I too have MPA with lung involvement that now requires ambulatory oxygen and have had my respiratory lung functions cancelled and respiratory appointments move back, also at Addenbrookes.
Quite scary when you feel that your entering a downward pattern.
I understand how you feel.i have complained and gone to Dr.s for several years for the same issues.I received the same treatment. It has been 9 months since I was diagnosed and I had to fight for the dr.s to do more tests and research. they finally put things together after running ANAC blood test. it has been difficult during this time. I am not sure when it vasculitis or other things acting up. all I know is I deal with fatigue and pain more often than not. I have 2 young Dr. ENT AND GP which is frustrating also. my vasculitis Dr wants me to go through them with everything before I can see her.this creates a loss of time and extra expenses Hang in there.
take Care,
Bonnie
I was very lucky that my regular GP was unavailable after my third stroke in three weeks so I saw the newest doc, newly qualified, instead. While taking my bp, he noticed tiny purple spots on my arms and ordered an ambulance to take me straight to hospital. I was tested thoroughly and after an angiogram, was diagnosed with PACNS.
Had been complaining of eye problems for 2.5 years going backwards and forwards to hospital and they could not find what was wrong. Ended up going to a private ophthalmologist after my local hospital said it is just one of those things! Ophthalmologist spotted issue within 2 minutes.
Sorry some people may visit the optician before the GP
That’s very true but we are sadly limited for characters for the poll. But you could reply from after seeing your optician
I've voted 2-4 years for the proper diagnosis to be made (it took 3). I was initially misdiagnosed with ME, which was very wrong, and of course I got no treatment for. It was very very hard to get medics to reassess me after that misdiagnosis, even as my symptom pattern changed dramatically.
Officially 2 to 4 years. In practice much longer as I’ve had some of my symptoms a lot longer than that.
It took 7 months before I was finally diagnosed by a Neurologist with GPA and renal failure. He recognized the rashes. I was clear of rashes at that time, I had fortunately photographed some on my phone and he asked to see them. He asked how I felt. I told him I feel like I'm dying and my body is full of poison. I could hardly walk from the pain in my joints
If my G.P hadn't referred me to to him I dread to think what would have happened.
I had seen two rheumatologist, one dismissed me, thought I was making it up, the other diagnosed rheumatoid arthritis.
I kept pushing for a diagnoses. So glad I did.
from when I was first ill 7 years, and four referrals to rheumatologists. From when symptom's worsened 3 years visiting a rheumatologist who wasn't sure then asked her colleague, finally some treatment!By this stage I was desperate for some help.
Took around 6-7 years for me
Took around 6-7 years for me
After complaining to GP for several years, I went to an internist for diagnosis to no avail. 18 months later, I lost my vision with retinal vasculitis.
FYI, we live in Germany and my daughter one day came out in strange red marks all over her legs. We got a quick appointment at her "Kinderarzt" (pediatrician) and she was IMMEDIATELY diagnosed with Vasculitis. Not only was she immediately diagnosed, her pediatrician then found a children's specialist, Professor Kirchstein, at a hospital about an hour away, who treated Hannah along with the Kinderarzt until she was 18. She did have two or three stays in hospital, including a kindey biopsy at one point, but she received quick and excellent treatment. I believe we have been very, very lucky with the medical help we received. Hannah was diagnosed with HSP Vasculitis and although her kidneys have been slightly damaged, she's living a good and healthy life at the moment, with regular check-ups at her local Nephrologist who looks after her very well.
the GP messed around with me for well over a year, I used a private rheumatologist to start any formative help and eventually ended up with the vasculitis team at addenbrookes only when in ARF, neuropathy and impact on my lungs........
I first got sick 2 days after my very first XOLAIR SHOT (did this precipitate the ANCA & GOODPASTURES???). Presumed Pneumonia for 4 full months. Finally a doctor did some bloodwork, and I was 5th End Stage Kidney Failure, eGFR 10, Creatinine 4.75, and Blood and Scaring in Lungs. 15 Days in Hospital ICU and Kidney Doctor guessed the Vasculitis', Confirmed and started Aggressive Treatments. It was a fluke that got me into the right doctor, otherwise, I would not be here. The AntiGBM can take out the Kidney's in a matter of 2 weeks.
I already had an autoimmune condition other than vasculitis and this somewhat confused the picture. When a rash appeared on my legs it was picked up quickly by GP and rheumatology referral was instant.... I was fairly certain what it was. I have EGPA and I also have CIDP (in remission).
I do not have a diagnose yet. My Ophthalmologist thinks that is "highly likely" to be Wegeners but I need more testing but I think that people with rare illnesses are likely to be ignore by the GP and consultants.
My GP told me (after I got really distress) "I gave you the right treatment, I do not know what to do with you". I was very emotional because I had been with eye problems for 6 month and taking antibiotics like they were candies and I got "better" but never cure and the circle start again a few weeks later. By the way How someone can have the right treatment is they do not know what you have?
The interesting thing is that I have other conditions like a cough, a lung infection and sinus in the same period of time. I counted 4 rounds of antibiotics (one for 4 weeks that make the pharmacist jump), 2 rounds of antihistamine, continuously using steroid sprays (that I should not have), drops and creams for the eyes...
And they did not think that something was wrong with me.
I really hope you get your diagnosis very soon. If you have Wegener's you need the massive doses of prednisone, and Retuxsan, ASAP.
Have you contacted the VUK helpline at all? We could try and offer some advice or sign post you in the right direction.
yes, and I am really grateful. she helped me to understand the gravity of the situation (I was confuse about the illness and its symptoms) and helped me with the hospitals I could visit... actually, i was thinking in bother you again about a more practical issue about privet and NHS. thanks again.
My GP took several tests in that first 3 months without diagnosing PMR. I don't think he had any knowledge of PMR. The pain was so bad one weekend that I went to my local hospital A&E. Within the hour, a senior nurse practitioner recognised the symptoms, diagnosed me, , arranged a blood test to confirm and gave me a note for GP to put me on steroids! I am forever grateful.
I was treated for bronchitis, pleurisy, chest infection until I was so ill with breathing difficulties after 3 months and losing 2 1/2 stone in 5 weeks i was admitted to hospital, 10 days later, after loads of tests I mentioned I had, had another nose bleed. The next day I was taken to ENT before the camera was hardly up my nose she said I know what you have.
A relief to know I wasn't imagining it.
I have GPA (Wegener's)
Praise God for that ENT. Not all are familiar with Wegener's. I was ill with debilitating fatigue and no appetite for a good two months after my treatments started. I had lost 30 pounds by the time I was finally in remission! Best of luck to you.
I have had it since 2004 and have been in and out of remission a few times. This time is the longest i have not achieved remission 3 years. I will be grateful when the medication can be stopped. XX
I had a rash on both legs and extremely painful joints. The GP kept giving me Piriton and when I went to A and E I got the same drug. Eventually I saw a Dermatologist privately who diagnosed a vasculitic rash and referred me to a Rheumatologist .
Following immunosuppressant vaccinations for Asthma and Hayfever my life was sheer hell for 17 years before a skin biopsy and diagnosis of Vasculitis. Burning, itching, airways closing, passing blood and disturbed vision for about fifty percent of the time, the next 17 years have been just as bad. No medications have really helped except Prednisolone and with some of the side effects from past medications I have decided to just cope as best I can. I am too old now and feel too ill to travel from the Isle of Wight to the mainland to see doctors that have experience of the disease. No one over here even wants to talk about my condition any more.
Started with flu like symptoms. I was told twice by GP I had a virus. Had problems with allergies. Then developed asthma out of the blue as an adult. Finally terrible back pain before collapsing when visiting hospital for a scan. Then went to A and E
My GP said I had chilblains when I came out with itchy hives on the hands and told me to wrap up. When my toes started swelling, I insisted more than once to have blood test done and that's when they noticed something unusual.
Like everything else, about me, my diagnosis happened differently to most. I simply collapsed, in Central London and Someone- I have never found out who- took me into University College London Hospital. A 'Visiting Doctor', that's how it was described to me, apparently recognized Vasculitis. The rest, as 'they' say, is history.
With the benefit of Hindsight, I had had some eye problems, in the weeks before my collapse. No one, least of all me, had suspected anything, other than an Eye Infection. Equally I had a Kidney Biopsy, due to Blood in my Urine, several years before- again no-one made any connections.
So I'm STILL an 'Enigma' and, it seems highly likely, that I'll remain one. Oh well Someone has to 'Confound The Experts'.....Clearly MY job!
I'm would be Very interested to see, all the Results, Tabulated- in maybe a Flow Chart?
Very best wishes to yourself, Susan and Jann, how is he by the way?
AndrewT
I am plodding along as usual Andrew. Hope all is ok with you?
Just the 'Normal' hospital visits, so far anyway. A bit of a Problem, with my right ear, which, with luck, should be sorted out soon. Love to all please.
AndrewT
I was seen by a "specialist" who did not know what I had wrong with me or how to treat it. He was charging me £90 every 2 weeks. After 18 months I was getting worse not better and after much protests from myself I was sent to see a proper specialist who correctly diagnosed me and treats me to this day.
Vasculitis was suspected after approx 5 weeks after numerous hospital appointments and scans but I was admitted to critical care after 8 weeks.
I was diagnosed on my visit to the ER. Diagnosis confirmed within a month.
I was fortunate (?!) to have a sudden onset of feet and hand paralysis/numbness which led me to hospitalization at a multidisciplinary center. While waiting on the MRI a young intern put together my other symptoms (lung nodules, severe sinus problems lasting over two months) and guessed Wegener's. He had studied it recently in med school. This led to some specific tests: lung and kidney biopsies and blood tests. Even before the affirmation of the biopsies they started me on apheresis and prednisone, and scheduled the Retuxan infusions. Except for the vasculitis in my feet and hands, I am doing extremely well, leading an almost normal life. I still get the Retuxan at regular (every three to six months) intervals.
Hi john - would it be useful to combine this data with a question on what type of vasculitis it was? That way you could see if there was an indication that some types take longer to identify than others
It’s difficult to combine polls.. as characters are limited but maybe we could carry out a follow on poll. Let me mull it over.
You could do a link to a survey site like surveymonkey.com they are really easy to use and free. PM me if you would like some help. Surveys and data are my thing.
It might be interesting to show a map of UK, with dots (V patients) and square (hospital). It is now established it's only a matter of luck.... For those, who would like the names of V, you could use a colour-coded dots on the map.
Initial symptom of purpura, went to doctor diagnosed with hsp vasculitis, started on steroids. When symptoms increased and purpura did not fade- sent to specialist after approximately 8 weeks when urine showed small protein. After multiple different drug therapies failed (about a year later), approved for iv rituxan with diagnosis of complicated hsp. Now on routine iv rituxan for two years and fairly well controlled.
Hello John, I was referred very quickly to A &E by my gp, but only because she thought I had symptoms of pulmonary embolism. I have primary aortitis. It took a further 5 weeks before I was investigated and diagnosed. I spent 5 days in hospital, to investigate sky-high inflammatory markers and other abnormal blood values. At the time I was under an infectious diseases consultant, who was baffled, but persevered. He eventually sent me for a PET scan which showed up my inflammed aorta. Like many others here, I am the only person in my gp surgery with vasculitis and yes, they dont seem to know much about it. Basically, my abnormal blood results saved me, I guess.
I am in the quickest category but nevertheless was only a few days away from death when admitted to hospital. I think what I am trying to say is that severe and aggressive symptoms were missed by GPs, with near fatal consequences, even though the timescale of my diagnosis may look OK at less than 2 months!
First started September 2015, lost weight, feeling like passing out, feeling unwell, thought asthma was out of control. Sent for chest x ray told C.O.P.D. Another inhaler added along side 2 for asthma, no difference. Abdominal swelling and acute pain, told it was IBS prescribed more meds for that, they made it worse. Blood in urine and pain in kidney area, more blood test and abdominal x ray and C.T scan results clear no kidney stone. Continued blood in urine and pain in kidney area plus abdominal swelling and pain. Skin rash had also appeared steroid cream didn't work, sent to skin clinic sent to skin clinic Fexofenadine Hydrochloride 180mg prescribed to it was Hives. Went back 3 months later no change with rash so they increased Fexofenadine to 360mg a day, not change. Mean time had to have a camera into colon, and stomach, all clear. More kidney pain and blood in urine, another scan and abdominal x ray plus camera into bladder, results no kidney stones. Skin clinic got excited as a shin biopsy showed urticarial vasculitis, Dr dithered as to if they needed to see me again and didn't even know what meds I was on, sent me for an arm full of blood test. Got another appointment with her and asked what the blood test results were, she waved her hand and dismissed the question saying they were all clear even though one had clearly shown I was C-ANCA positive. Sent for more bloods and prescribed Dapsone even though I asked if was safe as I had asthma and C.O.P.D. Was ignored she went on to tell me what side effects to watch out for, the exact same as symptoms for asthma and C.O.P.D.. Told her I already had those symptoms with the afore mentioned chest complaints, so how was I to know if it was my normal symptoms or the side effect of Dapsone. She just giggled, shrugged her shoulders and turned away. Spoke to one of my GPs as I was not happy and asked for a second opinion or referral, eventually she said she would contact Rheumatology for a one to one discussion. Went to Rheumatology today not in the best of moods as was feeling sick, he had his own pre-set of questions, I had mine I wanted answers to, so what with feeling like I was going to be sick and stressed and fed up with everything I didn't give a good impression. He started to talk to me as if I didn't understand basic biology and that I didn't know blood vessels were every were in the body, had to bit my tongue and almost tasted blood. He seems to realize I'm not happy with the skin clinic and finally mentioned the Vasculitis Clinic but in the mean time guess what more bloods and urine test. At one point he left the room so I had a quick look at what was on screen. In bold capitals it stated C-ANCA positive but I didn't get a chance to read anything else as he came back into the room. Why couldn't the Dr at the skin clinic tell me? My usual GP made a brief mention about it but didn't want the skin Dr to know she told me. Why all the cloak and dagger? Why hide the blood results? Why can't they tell me the results or answer my questions. I know it a difficult condition to diagnose but why can't I be included and informed along the way instead of feeling like a Lab rat? Why can't/won't they listen and included me as a person who's body they're testing and wanting to drug and see what happens despite any concerns I may have? In fact why can't they see a human, a person, who like them want to know whats happening? After all its my body and surely therefore I have a right to know and an opinion. So after 2 and a half year am I any closer to a full diagnosis and now no medication apart from 2yrs of Fexofenadine that they stopped because one Dr wanted me me to take something I'm not happy with.
Somebody waved their hand at me once, then shrugged their shoulders. Eminent neurologist in Nottingham... It has taken me more than a year and a change of hospital to recover my confidence in provision following that simple gesture. Horrible. Cruel. They really should be called to account for it, or at least questioned about what they gain from it. These stories are so tragic.
It was very upsetting, to say the least. I was told everything you can think fo.it was when I went deaf in my right ear in about 8 or9 months. I became angry with the medical treatment I was receiving... I became stubborn and outspoken refusing the same responses to my questions and condition.i said I want to know what is wrong with me! there has to be answers, Sure enough, I had 2 wonderful young doctors that listened and kept searching until they found answers. I did not like the answer but am very happy to finally know what is wrong. I have
Grandomator s, Polyangiitis, Vasculitis spelling?
My GP has had only 2 cases of GPA in 30 yrs. Mine and 1 other. I was admitted to St George's via A&E when my lungs were attacked by the disease. 2 weeks in isolation because tgey thought it could be something tropical, 40 blood tests before being diagnosed. I was pretty ill, but once diagnosed put into remission within 6 months.
Massively thankful to my GP for being suspicious on a routine blood pressure check, sending me for numerous blood tests and scans and insisting that I had a renal biopsy by pestering thenephrologists. Diagnosed in less than 5 weeks from original appointment with her, and immediately then on aggressive treatment. MPO ANCA + was the diagnosis. Kidney function dropped to the floor. Matter of weeks till failure at the rate it was dropping according to the consultant. It gets me emotional when I think I could have seen another more laid back GP, particularly as she went on maternity leave the week after I left hospital. God bless the NHS.
Went to Dr various times ended up getting booked in for a sinus op but that got cancelled due to gpa taking a firm grip and ending up in a&e was actually accused of wasting a Dr appointment when I could hardly walk or breathe
I am new to this site but July 2017 I woke up thinking I had been head over the head with a hammer and my jaw was painful my Dr new straight away it was GCA and gave me storiods aspirin alendronic lansoprazole and. Zapain and then saw rheumatologist with in days
My case was rather different, rather like me really, I just collapsed in Central London and Someone- I never found out who- took me into University College Hospital, Accident and Emergency. Apparently no-one knew what was wrong, with me, until a 'Passing' Doctor suggested Vasculitis. Essentially, eleven years and a new Kidney, later here I am.
