With hindsight, how long did you have sympto... - Vasculitis UK
With hindsight, how long did you have symptoms of Vasculitis before being diagnosed?
John_MillsVolunteer190 VotersPlease select one:
Had mild symptoms since in my 20's. Mention this to doctor and agrees start of it. Unlikely to be Giant Cell but can't rule it out.
I was told i had inflamation of the joints for weeks and was just given anti inflamatories until such a time i was rushed into hospital seriously ill then it was weeks before i was diagnosed with WG and that was 20+ yrs ago when things were not so easily recognised.
I fell ill in autumn 1994 and wasn't diagnosed until late 1997. A many years delay is quite common in cerebral/CNS vasculitis if it doesn't present in a more dramatic stroke form, but rather a slower-developing MS-like form. Initially I was misdiagnosed with ME. My symptoms changed over the years to look much more like MS, with severe bladder incontinence and other clearly neurological things developing. I had to fight hard for new tests and a fresh look by medics, including arguing my case strongly with a hospital consultant. I'm lucky I did. I would have died if the disease had been allowed to progress much further without treatment.
I had problems from the age of 13 but was not diagnosed until I was 28 !
Forgot 2 say I'm 46 now
Had a form of vasculitis aged 6 and was hospitalised for several months . Looking back i suppose i was unwell before being diagnosed this time for about 12 years with problems with my liver and sensitive to pain and fatigue
looking back over the years, had the joint pains and energy draining for years but wasn't diagnosed till It affected my kidneys in 2009
i started feeling ill in 2000 i was praticly bed ridden with joint pains and swelling all over,and after a new consultant took over my case in 2008 i was finaly diagnosed with WG,all my tests previous were coming back negative and i was being treated for rheumatiod arthritis.until the biopsy on my kidneys confirmed WG
in october 2011 i was at work when my legs started hurting and became swollen and red i got an emergency appointment with the doctor who told me it was vasculitis my feet had been numb and tingly since february and i had renards in my hands since august
I noticed muscle weakness in my arms and legs in my mid forties which was 10 years before I was diagnosed with WG. After that, I had severe earaches, weight loss, hearing loss, night sweats and sinus problems. Apart from that I was feeling fine !. I am now 65.
I had general fatigue for several months, during which time I was being treated, unsuccessfully, for frozen shoulders. Then I had antibiotics for sinusitis, but after the 3rd course my doctor thought I had pneumonia and I was hospitalised for a week. A week later all my joints became very painful and stiff and a rash developed. When the pain became too much I went to A & E, a specialist was summoned, and I was diagnosed with WG. That was in 2007.
I have had problems on and off since 11years old including kidney problems when pregnant 30years ago. It wasn't until 7 years ago that things got really bad and even then I was another 4 years before I got anywhere near an answer.
General aches and pains for a long time, but they were so non-specific that the GP just thought I was being picky. The night sweats, cramps etc got mixed up, first with the menopause, and then with a marginally low thyroid reading. Never thought to mention the weight loss as I was usually very pleased and it never went too far! As for pain on brushing my hair, sore jaw, loss of hair on my arms etc, I thought they just sounded too silly. And it wasn't until very late that my strange blood pressure readings and lack of pulse were picked up.
With the befit of hindsight, I had had a 'rash' of sorts for years but it was never associated with anything! So basically i just callapsed, about fifteen years ago.
AndrewT
I had major problems in 1994 but was not diagnosed until 1996. Mine started with an ear infection & cascaded from there.
First signs in early 2000 diagnosed as 'an allergy to our cat!' Hospitalised Jan 2007 and dragged back to life. Thanks to those who saved me. I'm now 66.
I developed late-onset asthma in 1999. Diagnosed with CSS in Jan 2009 my consultant said it could have been undiagnosed possibly two years previous. With 'hindsight' this would appear feasible knowing how my health changed markedly over time. Except for the each illness was treated in isolation. 1) At approx two years pre-diagnosis (2006) I was concious of tingling in my fingers while driving (hands upward holding steering wheel), after driving symptoms disappeared. Thought nothing of it. 2) April 2007 patches in lung, possible pneumonia diagnosed (treated accordingly). 3) July 2007 throat/chest infections - asthma much worse and difficult to control. Eventually saw specialist, medication changed. Symptoms improved for approx 2 months. 4) Oct 2007 - Sept 2008 frequently getting throat infections (antibiotics taken). 5) End Oct 2008 urine infection. Symptoms lasted 6 weeks but no infection found. 6) End Nov 2008 went deaf for a week (antibiotics taken). 7) Beginning Dec 2008 heavy flu symptoms for a week (Wife had flu for same week then recovered). Second week of flu (supposedly) had different symptoms. Right hand/arm, constant painful pins/needles sensations (painkillers prescribed). Several visits to GP for more pain relief as pain increased and symptoms spread to left arm/right leg. Continued with painkillers into 2009 but little relief. 8) 3 a.m. 5th Jan 2009 complained of tight chest, called 999. Paramedics did tests and said it was probably a panic attack (Wrong - but they couldn't feel the constant pain inside me!). My Wife insisted I went to A&E, thank God she did!
Points of note: I had no visible indicators. With the urine infection (?) ensuring frequent day & night trips to the loo, followed immediately by flu (?) then the ever increasing pain ensuring I walked the floor each night, I had little sleep for 2 months.
I also recieved a by-product of pre-diagnosed CSS while in A & E, approx 5 hours. The pain prevented me from sitting still so I kept sliding up and down on the trolley (they are slippery). Result - a bed sore below my coxis before I even got in a bed 
CSS diagnosed 1998.
Asthma was diagnosed a little over two years before.
I also had a cardiac arrhythmia in the previous two years which was not fully understood.
Symptoms of intermittent exhaustion over previous two years - finally saw GP who prescribed anti-depressants. This was three months before I took myself into A and E and was admitted. . Diagnosis was made a week later by which time I had been transferred to another hospital into their ITU
Although I was only really poorly for about 3months, looking back I had suffered with fatigue for several years. I had a clot on my lung which they couldn't find a reason for and kidney problems that they said I'd probably had since childhood. Some doctors thought this could be to do with w/g but others didn't agree.
I started suffering with joint pains and swelling in Apr 1995 and was initially told I had rheumatoid arthritis and like many others had various treatments for that for about 8 months - but which stage I was unable to get out of bed on my own because the joint pain was so severe - I lost 5 stone in weight and was finally hospitalised and diagnosed with WG in the Dec of the same year. Having read everyone else's comments I think I have been lucky and diagnosed quickly. I was extremely healthy before Apr 1995 and definitely did not have symptoms before that. I was 26 when diagnosed and 43 now.
In relation to what Vivdunstan has already said, my Cerebral Vasculitis presented itself with the more dramatic stroke version, I had a series of mini strokes which were ignored at the local hospital and then a large stroke when the Cerebral Vasculitis was diagnosed. So from start of symptoms to diagnosis was a few weeks. But in this time I had a lot of brain damage, worsened by the delay in diagnosis?
Sarah
I would like to add an addition to my vote. Talking about it to my work colleague she reminded me that, prior to me being hospitalised, I had been complaining during the year before of all sorts of nasties. Pains in my ear, painful teeth, painful throat and generally having days when I felt so blooming terrible.
There was nothing specific I could say causing these aches & pains though. I did pay a visit to my dentist to have the pain dental pain checked out and GP to have ear/throat pain looked at but nothing was found. My work colleague put it down to age - I was only 52!!!!! I knew there was something not quite right but I couldn't put my finger on what was causing me to feel so bad.
So, all in all, I would say that I had been feeling poorly for around a year (or a bit longer) before I got really bad with what I thought was really bad flu symtoms in January 2011. Was diagnosed with WG resulting in Kidney failure 1st April 2011.
Jacqui M
I remember 10 years before i was diagnosed and i was being sent round the hospital to various departments (ENT, EYE) and a quirky little irish dr asked if he could see me and give his opinion. He asked loads of question and gave me a thorough examination and said he would write to my Gp. When i went to see my Gp he told me what the the consultant thought it might be WG, but as it was so rare, he didnt think it was and not to worry about it!
"but as it was so rare, he didn't think it was and not to worry about it". Oh dear, what a response. Didn't he stop to think that if a rare disease exists then some people will just happen to be affected by it, and if you were presenting with the symptoms then there was just a possibility that you might have drawn the short straw?
PatriciaAnn
It seems most people have problems for many years sometimes before diagnosis and reading comments from each poll is very telling and a very useful resume. Certain things start to shout out at you as they start to repeat, from different people, over and over again. Can I just thank John and Susan for taking the time and trouble to do this, it's so very important and hopefully one day will be very useful for the medical profession that have to treat those with Vasculitis and other autoimmune diseases . We just have to get them to listen to us now. Just reading about what others have experienced has been very useful for me. Big thank you from me!
My vasculitus was diagnosed within a week of being admitted to hospital. Originally they thought I had meningitis. Have now had it since 1996. Was told I was lucky as could have died or gone blind from it.still receive treatment now but luckily I'm under a good hospital. Nice to have this site can relate to how people feel . And share stories
