Introducing myself... ANCA positive

Hello

I have joined this forum in an attempt to gain some further understanding about vasculitis and be part of a supportive community. I am frustrated and upset because it has been 7 years since I started getting symptoms and I feel like I am constantly having to persuade Doctors that I am genuinely unwell. I have a diagnosed mental health condition too which increases the stigma tenfold.

I am 24 years old, female, and it all started 7 years ago where I had a cough for 8 months. I had 4 different sets of antibiotics (which didn't work) and eventually it subsided on it's own. I was diagnosed with chronic sinusitis and adult-onset asthma. Over the next 4 years I struggled with reoccurring sinusitis and various other infections. I get awful post-nasal drip and carry a ridiculous amount of mucus in my sinuses which have never gone away. I have tried approximately 10 different nasal sprays and tried anti-histamine drugs. None of them work - and one Doctor even accused me of not taking it...

I also get 'face migraines' where my cheekbones and jaw feel like something is gnawing at my bones from the inside. They are debilitating when they come and are worse when there is high/low pressure in the air. These migraines run in my family.

Throughout this time I struggled with extreme fatigue, where my muscles felt so weak I had to lie down just after walking up stairs. This was all put down to poor mental health as I was being treated for depression at the time.

I also have been diagnosed with IBS and get severe bloating /cramps.

Anyway, for those 3-4 years I felt very very unwell. I was never hospitalised (apart from for abdominal pain which went away by itself after 10 hours). However there were times where I spent 3 weeks in bed, unable to move because I felt so unwell.

I always have thrush 'down there' and in my mouth which doesn't react to treatment and I've given up trying now.

I started to get rashes, sometimes it looks like eczema just localised to one little circle, sometimes it is deep itchy bruising in my legs, and currently it is in the form of small itchy blisters on the palms of my hands.

Doctors just looked at all my symptoms individually, and they only ever had time to ask me about my mental health which at the time was probably the most serious issue.

Since then, the sinus problems are still exactly the same. However, I feel less tired and get half as many infections as I used to. (I haven't had full blown sinusitis/tonsillitis/UTI for a couple of years now). The rashes are also no where near as bad.

And yet; I now have an unexplained chronic hip pain with popping/grinding and the general feeling of 'bone on bone'. All scans are normal. This is 2.5 years undiagnosed so far. I then developed last year neuropathy in my middle spine - I get very painful burning/tingling in my middle back which comes and goes. It took 5 months just to persuade the doctors that I knew it was nerve pain and not muscular....... Then I proved it with Amytriptaline which was the only drug which reduced my pain, finally indicating to them that it was actually neurological!!

Finally there are weirder nerve sensations that I get, such as sudden 'electric shock' feelings which rush through my brain or throughout my whole body. It's quite unsettling.

Anyway, i had a positive ANCA result last month and am waiting for my referral to rheumatology. I am asking you all, in your experience does this sound like it could be a form of vasculitis?

What confuses me is that I seem to have got BETTER (minus the added nerve pain/issues now). Is it possible that I had vasculitis which entered a period of remission by itself, without treatment? Like I said, my problems are now sinuses, nerves, and rashes. I don't feel any where near as flu-like unwell like I did 4 years ago but I certainly feel like 'something is not right'.

PS: I've recovered well from my depression, which is only triggered nowadays by my physical health flare ups!!!

Thanks for reading all xx

5 Replies

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  • Hi,

    I am sure other people will be along with their experiences but it might be best to phone or e mail myself or John on the VUK helpline

    vasculitis.org.uk/helpline

    As your symptoms have been ongoing for a while we can advise you better if we get some more information/ ask targeted questions.

    Best wishes

    Lynn

  • I too had sinus problems from the age of 12 to the menopause at 58. My rash sounds exactly like yours and that came up every couple of months for years. It was only two years ago at the age of 61 that I was diagnosed and that was because of neuropathy symptoms. Do ring the helpline as you really need help to get diagnosis and treatment quickly.

  • Hi Nozboss, I am sorry to hear of all those horrible symptoms and the horrendous problem of being ignored by Doctors. I totally empathise,as I have been going through the same thing for a couple of years.

    My illness also started with a really bad virus, chest problems, couldn't get complete breath, numbness down left side of my body, pain under left rib cage, electric shock pains in my eyes, blurred vision. The list goes on and on. I also had the rashes, but I have been sent all over the place, much against my GP's wishes,as he says I am just anxious. I certainly am, as I am concerned what is going on with my body, but as the "wonderful Keyes" said, the anxiety is not the illness!!!!

    I also have scleritis and ocular hypertension in both eyes, so I am seeing lots of different people, but no diagnosis yet. I fully understand what you must be going through, but there are some excellent people on this site who will share their experiences and give you comfort that we are not going mad, there is just something going on with our bodies.

    I have found the help line really valuable and Keyes and John Mills and Suzy his wife, are invaluable for the work they do.

    I wish you well and take care of yourself.

    Have a very merry Christmas too!!!!!

    Suzy

  • It is possible that by now, you have rung the helpline as suggested, and you may be further forward. I just wanted to say that reading your symptoms, it sounded like myself, except mine didn't go on for quite as long, (7 months altogether),before everything got much worse and kidneys were involved, and I was hospitalised and diagnosed with Churg Strauss.

    It certainly seems like you should be being thoroughly checked out if you are ANCA positive. I hope this will happen when you have your appt.

    I don't wish Vasculitis on anyone, but if you have it then the sooner it is diagnosed the better.

    Just want to send my best wishes, and hope you get sorted soon

  • I am not a physician but a scientist with medical training and from the symptoms you have described it sounds as if you could have a form of vasculitis which may have gone into remission

    ANCA positive tests ( neutrophil cytoplasmantibodies ) are found with vasculitis diseases such as

    Granulomatosis with Polyangitis

    ( formerly Wegeners granulomatosis)

    Microscopic Polyanglitis

    Eosinophilia Granulomatosis with Polyanglitis (formerly Churg-StraussSyndrome

    Vasculitis is a very rare disease and many Doctors do not come across many patients in their career

    It is important you get answers because you may need medication to prevent problems if it flares up again

    Let me recommend the site

    Www.vasculitis .org.uk

    Which has a lot of useful facts and information

    Good luck with your Doctors and well done in overcoming your mental health problems which in the circumstances are not surprising

    Best Wishes

    June

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