Hi All,
I'm trying to get a diagnosis for the symptoms I have experienced for years. After getting in touch with Vasculitis Uk I went to my GP and then had blood tests for ANCA. They have informed me that it is negative but I'm convinced I have small vein vasculitis. My GP was reluctant to do the test so what would the next step be as I dread butting heads with the GP in order to move forward. Thanks Jayne
You will probably need to get a referral to a specialist which your GP will do. Speak to the help line to find the best person for the referral to be made to. You will learn that with this disease you may have to 'butt heads' with your GP, they don't know much about it usually so you will have to start standing up and speaking up. Don't be intimidated by your GP.
What are your symptoms and reasons for believing that you have small vein vasculitis?
Have you had any other blood tests, such as inflamation markers (e.g. CRP) and kidney function.
The most reliable test would be a biopsy of the effected organ (e.g. kidney), where would you say vasculitis is causing you the most concern?
Thanks for the reply, its my sinus' I've had infection problems for nearly 30 years. Over the last five years I have had increasing fatigue, joint pain, neuropathy pain, twitching & stabbing pains in my legs etc. The last two years have seen my right hand/fingers swelling and numbness /tingling in my feet and hands. Sinus pain creeping down to into my face and my lips are swollen quite often. About twice a year my eye bloods up like I've taken a punch and I have the thread vein butterfly pattern on my face but as with all of the above the symptoms have been explained away as other conditions. The last six months I have experienced pain in my head which is scaring me now. If I go out in the cold/wind, sit in air conditioned spaces my sinus' flare up instantly and they also react to things like perfumes, air fresheners, bleach products etc and have taken anti-histamines for years although they are much less effective than when I first took them or alternatively I have become increasingly sensitive.
As Essex-Jill mentioned, nasal biopsies can be used. They are not always accurate and can sometimes come back negative, or inconclusive, but one of my flares were confirm with a nasal biopsy. It's the least invasive biopsy and as you're having nasal symptoms, it's a no-brainer.
I can understand GPs dismissing patients when they tell them that they have done their own research and think they have a particular condition/disease/illness, but unless the dr can come up with a diagnosis themselves, they should investigate the patients concerns fully.
Hello MiloOO I am so sorry you have gone through this. I too have spent years telling my Dr.'s something else is wrong.I had all the same symptoms you have.i had to get very tough with GP, ent, etc. before they found GPA which is vasculitis. i have been on med's for approximately 2 years now. Good luck on finding the right Doctor. Stay tough! and hang in there, i pray you get referred to the right Doctor.
I wish you the best,
Bonnie
Hi Nadine,
I've had contact with John who gave top advice and would given a choice prefer to go to addenbrookes as its close to where my son lives although some distance from where I live. I'm have spoken up, actually stating I think I have some form of vasculitis but have found my GP to be disinterested which I do find intimidating. I shall have to get myself an injection of courage and book an appointment to press for more. Many thanks.
Hi
I was diagnosed over 20 years ago with Vasculitis and have always been ANCA negative. Yet a nasal biopsy confirmed the diagnosis. I go to Addenbrookes as they are brilliant and really listen to their patients and not just the blood results.
Wishing you good luck x
Sounds like it's high time to get fierce and scary with the GP. Could you print something out and highlight the symptoms you have? Take someone, anyone, with you. Practice what you are going to say. Threaten to complain or sue if you have to. You need to be your own mamma bear.
These battle with GP posts that occur on here make me really mad. What do they gain by not making a specialist referral? I'm gritting my teeth along with you.
If it wasn’t for my ENT consultant I too would have still been undiagnosed despite numerous visits to the GP over the years with sinus problems etc. He listened and referred me to the rheumatologist even before my ANCA test was known. I’m still under both consultants at the WSH, Bury St Edmunds. I can’t fault their care and not surprised they have an outstanding award from the CQC. I’d ask your GP to refer you to the rheumatologist. Good luck!
Thanks for the reply. Going online to look for help was my last resort. Have tried on numerous occasions to get GP to join the dots without success. Last year I had whooping cough which was horrendous GP said it was just a cough and cold. I found out there was a specific test for whooping cough and the GP reluctantly did it after reporting the continued breathing difficulties I was experiencing - Public Health rang me on holiday confirming whooping cough and quizzed me about the treatment received. Went online to look at chronic sinusitis about this time and the vascular reference just jumped out to me so why not my GP?
I have to see a respiratory consultant now as whooping cough may have damaged my lungs and I'll talk about my symptoms with them to see if they can help decide the next stage towards diagnosis.
Thanks to all everyone that has responded advice has given me the push to change my GP if I don't get the help I so obviously need.
Most ordinary GP's do not take symptoms seriously, especially that of middle age and older women. As the others have said, there are times you have to put in the gorilla suit and threaten to report them to a higher authority if you. are not getting the care you deserve, and is best done in a logical, well organized letter with a c.f. to the doctor in question.
The first rule is that lab and biopsy reports are not always correct, and need to be done repeatedly to be sure. I had an opposite experience when I had a positive C-ANCA with a low titre . I went to a rheumatologist because of new and sudden upper body pain and severe fatigue I had never felt before. Lots of blood tests were taken that day, but nontheless, I was started on 16 mg. of prednisone , and in 2 days all musculosketal symptoms were gone . I felt great. That can be diagnostic for polymyositis rheumatica in and of itself.
However, being a thorough person and not liking a C-ANCA antibody floating around in my bloodstream, I sought a consultation with a vasculitis expert at John Hopkins University in the U.S. where I live. Had to wait 5 mo. for that appointment. The doctor was a lovely lady who spent 1.5 hours with me; she had already reviewed all records I sent. She repeated all lab tests, and they were all normal. She considered polymyositis rheumatica, but my sed rate and CRP were normal which bothered her because usually they are elevated .She recommended a very slow weaning off of Prednisone.
When I returned to the original rheumatologist, they prescribed
Methotrexate in small dose. That is when I changed rheumatologists. The new rheumatologist was disturbed by that and so was a hematologist I saw. I stopped it. It made no difference.
PMRpro. who is a wealth of medical information on this site will tell you that normal CRP and SED rates occur in about 20% of PMR patients .
The last 2 ANCA Panels I have had have been completely negative.. I am telling you this story to point out that lab test results can be wrong, biopsy results can be wrong and doctors can often be wrong.
In your situation, you need to go back to the beginning with a demand to see a new GP. Don't jump to the conclusion you do , or do not have a condition because of something you read on the internet. e.g..
I have chronic sinusitis documented on scans(s) since I was a teenager, but I do not have vasculitis. A nasal inhaler of a steroid solution ( here in US called Nasonex or Flonase) once a day works wonders. I have had horrible sinus headaches on rare occasion, but I do not have vasculitis. I have had facial pain too from sinusitis, but I do not have vasculitis. A bloody eyeball can occur from a violent sneeze or cough, or from lifting something heavy, and is not concerning and clears up on its own.
We have to be careful not to conclude we have a condition or a disease because of symptoms that may not be connected. The internet is a wonderful tool, but it's not the final word on each individual.
I am curious : if you do have small vein vasculitis, and it was proved by the next test, what treatment are you looking for?
If you think there is something wrong, there probably is, but it may not be what you think it is.
I am sorry for all your pain and worry, and obvious frustration with the medical system, but please keep your head. Even if you do have small vein vasculitis , it's not the end of the world. As others have said, use your advocacy system relative to your Health Service. I am in the United States so am not familiar with it.
Sounds like some hot tea and a relaxing activity would be good at the moment and some reflexion and "mindfulness" that. has become the cliche at least in the US for self reflexion. All will be OK.
.
Hiya, Thanks for the reply. If I could get a diagnosis based on the symptoms and a biopsy which I shall ask for now, my hope is that appropriate treatment will prevent it from getting any worse. Ordinarily I'm a glass half full kind of person so apologies if I've come over a bit negative.
You didn't seem negative at all. X
Hi Milo00
I have vasculitis and also was a GP! I feel rather ashamed of my profession but still agree with the comments above that a catalogue of symptoms don't necessarily add up to vasculitis. I found out far more as a patient than I ever did as a GP. For me it was the very high ESR and CRP which got them convinced there was something seriously wrong....and it was still 3 months and lots of horrible investigations later that a "working diagnosis" was made. The nasal biopsy was inconclusive as were most of the rest.
Good luck with getting the answers
which type of consultant helped you get the diagnosis, you say 'them' was it more than one specialist?
thanks Jayne
Thanks Jayne,
I went first to a kidney specialist since I had traces of blood in my urine. I felt really ill with severe headache and fevers and incredibly tired (falling asleep for hours at a time). He thought it might be a serious urine infection but did a scan which was normal and bloods which showed my very high inflammatory markers (ESR and CRP). These didn't get better even with antibiotics, so I got sent to a physician with interest in kidneys and he ordered more scans. Vasculitis was mentioned as a possible cause early on, but because I also had "sinusitis" and shadows in my lungs, I had loads more tests including sinus biopsy, cystoscopy, heart ultrasound, etc etc until they had excluded every possible other cause. The scans which showed anything the matter in my case were scans of the aorta and the carotid arteries. These showed thickening of the lining of the arteries and they called it "large vessel vasculitis". I was on steroids for 2 1/2 years. I couldn't tolerate methotrexate. I am now apparently in remission, but still feel exhausted and nothing like what I was before it all started ( 5 years ago).
When I started the whole stuff...I was living abroad and had private insurance so was able to ask for tests which maybe wouldn't be agreed here in the UK. I wasn't convinced that the consultant was an expert in vasculitis so I contacted John Mills who suggested speaking to a London consultant. Both were fantastic and a lifeline at the time. I also read a lot about it myself, and was more or less managing my progress myself (not very good as I was confused and headachy all the time). I am now under a rheumatologist in the UK...but honestly not very impressed. She never has time, and its always hours to wait in the clinic. My GPs are really good however, and will always refer me for second opinions if I ask them.
For you...if your GP is not interested, personally I would change my GP and get some recommendations before you choose....I think you really need true confidence in at least one doctor.
Good luck
Hiya, thanks for the advice - its reassuring to know its not just me that has been in this position. I'm seeing a respiratory chappie next week so will explain stuff to him and if he doesn't start the ball rolling I'll opt to pay private as I can't risk deteriorating any further. Family are willing to chip in so with that incentive it's probably what I'm going to have to do.
thanks for the support. Jayne
Yes! I agree with most of the replies. You likely won't get anywhere with a GP - or even most Rheumatologists. If you really think it's a vasculitis a vasculitis center will be your only real help. There ANCA negative vasculitides! Polyarteritis Nodosa is ANCA negative, and in Eosinophilic Granulomatosis with Polyangiitis (EGPA) only about 45% of the patients are ANCA positive. I agree that a nasal biopsy at this late date would likely not help. C-reactive protein labs, and comprehensive blood work which included eosinophil % may be helpful as well. Hope it's not vasculitis, but it's good to know if it is. Treatment does work!
thanks for this, info is most helpful.
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