How hard is it to get diagnosed?

I am at my wits end and feeling very frustrated. I have seen 5 specialists and nobody can tell me what is wrong with me or what might be happening to me.

I have a positive p-ANCA and neg MPO. All other blood tests normal, inflammation normal, autoimmune normal, no protein in urine, kidney and liver blood test normal.

My symptoms are ringing in ears for 5 seconds anywhere from nothing for months to a few times per day, sore feet and hot hands, sometimes headaches, lately burning eyes and slight nausea on and off night and day, but not enough to be sick. I also had excessive fatigue for one week and now that has dissapeared.

I can have months where l feel pretty normal and then weeks where l fall into a heap.

I know the p-ANCA alone means nothing, but when do the doctors actually take notice? When my organs start to fail? Is that what they are waiting for? If that's the case l can pretty much diagnose myself, not sure why l would need them in the first place.

I would travel anywhere in the world if someone could diagnose me. Maybe visiting a vasculitis centre would help. Either to rule vasculitis in or out.

The doctors here in Australia seem to say, that l don't have vasculitis yet, as l would be very, very sick, but they cannot tell me if in 5 years l will have it or not. But that doesn't help me now. What if l am in the early stages of it? Not sure how quickly something like MPA progresses as l guess it different for each individual, but it would be nice to know what the heck is going on.

I asked then if l can be blood tested for other antibodies like BPI and elastase etc, etc and they said not sure if these labs here can test for those, as l was reading that some people can test positive for other antibodies with the p-ANCA apart from the MPO. So this may lead me to some kind of diagnosis.

Has anybody had an experience with this before?

I can't just sit back and wait to get diagnosed l need to find out why l am feeling so lousy at times, my body is telling me something.

Cheers sue

13 Replies

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  • It's a difficult question Sue. I have PAN, one of the rarer forms and it took 18 months to diagnose. I did need 5 weeks in hospital during this period for some of the more severe clinical symptoms. You babe my sympathy.

    Have you had any nerve conduction tests or MRIs performed?

  • Yes l have had a nerve conduction test in April which showed sensory polyneuropathy, very mild. Had an MRI Dec 2011, all clear there. The reason l had the MRI was l was getting like a floating feeling for weeks at a time last year with hearing changes, haven't had an epsisode of that since Aug 2011.

    Its seems like just have to sit and wait as l have no idea what else to do at this stage.

    Cheers sue

  • Hi Sue,

    I was diagnosed after two weeks in the hospital with churg-strauss vasculitis. A diagnosis is simply a certain number of criteria that are usually found by the various symptoms one has, tests that are given and history. If you have 3 out of 5, you have one diagnosis and 2 out of five might be something else. I know that it is difficult not knowing what is wrong, but sometimes knowing or labeling a condition can also be disconcerting based on a certain criteria. Because I only had 2 out of 5 of the criteria that gives one a diagnosis of Churg-strauss syndrome, the Doctor tried to convince me that I had polyps and sinus problems, but I didn't have them at all. Where is the line drawn.

    My lower legs were paralyzed, I had foot drop and my right hand also had nerve damage. I was in the hospital for 2 months. I could no longer walk. I took all the drugs until I couldn't stand them any more and decided to go to a Naturopathic Doctor, a good one of course who didn't believe in diagnosis, because it is too vague and we are each so individual. I am off all meds except for a rescue inhaler. My immune system is working for me not against me. My goal started out to get my very confused immune system back in balance. It made no sense to me to destroy the very thing I needed more than anything else, my immune system. It took a while, but I have been able to achieve homeostasis now, and it gets better and better.

    My recommendation would be to get a second opinion from an Alternative Physician, a Naturopathic Doctor who perhaps specializes with autoimmune dis-ease. I had to change everything so that I could heal. We all have a great opportunity to heal if we are alive. But there are other ways to go, contrary to what so many believe and seem to be stuck on,.

    Whatever you do, I hope you find the answer that will make you feel at peace with your situation. Janet

  • Dear Janet,

    Could you please give more information about your naturopathic treatment? What it entailed and what benefits/improvements you received/noticed? I am doing extensive research on that. Of all my research, story of "Terry Wahl's" is most inspiring - you may want to check too.

    Wishing you all good health.

    Kunal

  • Hi Lilly, l am so glad you are doing so well. Did you did this without any kind of meds?

    Who did you see? Would love to speak to them too.

    Just want to feel myself again.

    Not sure how many boxes l actually tick when it comes to diagnosing vasculitis, but from what is seems doctors here in Australia mainly look at kidney and lung function as well as a rash as the main diagnostic tool for vasculitis. I have neither of them. I do have neuropathy (mild), and some fatigue which comes and goes and others as stated above in my original post. Whether that classifies me as having vasculitis or not l have no idea, the doctors sure don't seem to think so. But how do l know they are right? I know l feel lousy. I know something is wrong. But l don't know what it is. Is it seriouse or mild?

    These are the questions l am asking all the doctors and l get a, "let's wait and see", approach. Drives me mad.

    Cheers sue

  • Is there anyway your consultants can talk to David Jayne at Addenbrooks in Cambridge. . It is a centre for Lupus and Vasculitis. David is one of the best and a really nice person too. He also has a team of other medical professionals and doctors all in the same hospital who also specialise in Vasculitis and Lupus. David is quite willing to work with other consultants in other hospitals to support with diagnosis or treatment of Vasculitis. If you send us a message John maybe able to help .... It took the hospital 6 weeks, 11 years ago to diagnose John with WG.

    take care

    Susan

  • At the risk of sounding stuffy, on this site, we don't recommend any treatment that is not evidence based. Naturopathy might have a role but it is generally not evidence based. The fact that an individual seems to have benefitted from naturopathic treatment does not constitute evidence.

    Just to put it in perspective, until the introduction of steroids, in the 1940s, anyone with what we now call ANCA vasculitis would die within weeks. Prednisolone sometimes increased this time from weeks to months or even a couple of years, but it it is only since the introduction in the early 1970s of the powerful immune suppressing drugs like cyclphosphamide, (then methotrexate, azathioprine and more recently, mycophenelate), that most people with vasculitis can expect to make a reasonable recovery (although still not be "cured").

    Modern medicine did not evolve to give doctors a job, but because in the majority of cases, traditional or naturopathic medicine did not produce the results. In many parts of the world, vasculitis is still rapidly fatal.

    Conventional medicine is very closely regulated and medical doctors are not allowed to use drugs or surgical intervention techniques that have not been fully tested for their safety and effectiveness. This does not apply to naturopathic treatments. Traditional Chinese medicine is responsible for the near extinction of the rhino, hunted just for its tusk and the tiger for its teeth.

    However vasculitis can be very difficult to diagnose and there are no reliable definitive tests. The best way of getting better from any disease is to have the benefit of advice from someone who has great experience of that disease - and there is sound evidence to back that statement!

    There is also sound evidence that people often get better without any treatment at all, which is why if you go to the doctor with an ailment he/she will often offer no treatment and say "come back and see me in 2 weeks if it's no better". The experienced doctor knows when to offer no treatment and when to rush you into hospital. The "placebo effect" where people get better when given treatment such as pills or medicine with no active ingredients at all, is very well recognised and documented.

    So if you do choose to go down the naturopathy route, do bear all this in mind - and do it alongside conventional medicine and tell your doctor about it.

  • Not sure if the doctors think they need to speak to anyone other doctors as they seem to think there is nothing to worry about for the time being. The other option would be for me to speak to David Jayne. Do you think that would be possible for me?

    Snez

  • Sorry Sue. I ignored your question and your problem and went on about my thoughts on naturopathy, which was very bad of me!

    I am not a doctor, but I did spend 4 years at med school (I became a dentist) but I have vasculitis myself (WG) and have made a study of the subject for several years. I also deal with people with different types of vasculitis on a daily basis. I have to say that apart from the +ve MPO reading, your symptoms don't really fit the typical pattern of any of the 15+ types of vasculitis. Of course there are numerous other diseases that share the same symptoms as vasculitis, which is why it is difficult to diagnose. Also, the ANCA test is notoriously unreliable and the results can vary from lab to lab. I know of peple who have had all the signs and symptoms of serious vasculitis but are ANCA-ve, whereas others have high ANCA levels and are perfectly healthy - it's a complex and very variable disease.

    People with vasculitis often say that, with hindsight, the symptoms of the disease in a mild form had been there for months or even years before it emerged fully. These could be stuffy nose, fatigue, aching joints etc. This could be the case with you. However MPA/WG is the only type that sometimes creeps in quietly and affects the kidneys without any other symptoms. So if you can persuade your doctor to give you regular blood test for urea & electrolytes, to monitor kidney function, you should be OK. Of course if your other symptoms get worse or more persistent or you get new symptoms, that should ring alarm bells. But there are other diseases that might be the cause of your symptoms, so don't let what I have written above deter you from seeking a definitive cause.

    If you would like to send a private message listing all your symptoms - no matter how irrelevant they may seem - it might help. I can also send you Dr Jayne's email address. He is very busy but very approachable and understanding and is always willing to discuss cases with other doctors - Cambridge UK is a long way to come for a consultation if you live in Oz!

    John

  • hi john, slightly diverting , i have wg and from it i had kidney failure resulting in me having to have dialysis 3 times per week. the question i would like to ask is do you suffer with tiredness, because the last year the wg has been inactive but i can till get exhausted if i go mad and do too much,but i dont know if this is the wg or dialysis. because i would have thought that if the wg in inactive i wouldn't suffer any of the symptoms of fatigue, i never really get a straight answer from the docs and as you are a wg sufferer i wonder if you suffer from fatigue, i presuming that the vasulitus if inactive, best wishes

  • Sensory neuropathy is interesting. With small and medium vessel vasculitis you often also see motor damage; the occluding blood supply make the nerve ischaemic and as a result there is axon loss in the nerve, leading to loss of motor function and muscular atrophy as uninnvervated muscles lose bulk and become fibrous. A neurologist would identify this through greatly increased conduction times, or through evidence of a motor block. Typical demyelination neuropathy only reduces the nerve's SNAP potential.

    Vasculitis normally starts in a mono neuritis multiplex pattern, taking a single nerve at a time in a limb and rarely symmetrically. The nerves usually effect first are peroneal and sural in the leg, then ulnar, followed by radial in arms. The median nerve in the arms is nearly always spared. I have had more than 20 different sets on my peripheral nerves in the last 2 years, so I managed to learn a fair bit about this.

    I have also never had a full on rash, but I have had deep punched out ulcers for on my hands and feet. The skin involvement is something a clinician would look for to determine if the disease was systemic or not.

    Yes, vasculitis makes you tired, pretty much constantly and in flares getting up is like wading through treacle!

    I'm sorry you're having a bad time getting a diagnosis; I think John and Susan make a very sensible suggestion.

    Take care

  • No need to apologis John,l understand where your coming from.

    MY MPO was actually negative, but the p-ANCA was positive, so l guess this is what they call an a-typical p-ANCA pattern, which can mean vasculitis, but other things as well. But l am trying to look more closely at my symptoms.

    How often should l have my urea and electrolytes tested? Is is mainly the kidneys that need to be monitored? What about other organs like the lungs and liver?

    It doesn't appear that l have any kind of motor neuropathy, l can still walk fine and move my legs and arms and don't have any kind of foot drop. Which is good. I did have a sore knee in the area puroneal nerve is located a few months ago, but it went away and l don't think if it was nerve damage as it wouldn't go away, so it must have been just sore knee joint.

    I mainly get hot hands and sore feet and occasional shooting vibrating pains down from my knew to my feet lasting for 5 seconds a few times per week.

    From what you described l don't seem to have any kind of neuropathy that is evident in vasculitis. I am so glad you have cleared that up for me. Wellsie, how has this nerve damage effected you? What were you first symptoms of the nerve damage? Sounds like you have gone through a lot.

    cheers sue

  • Hi Sue, I know this is a 3 year old post but I am suffering the same as you are. I have bee waiting 6 years to be diagnosed. I have P-Anca and MPO positive and they still think I don't have Vasculitis, have you got anywhere since your last post?

    Hope you see this to answer.

    :)

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