I'm pretty new to this. I have a tentative (?) diagnosis of 'limited' Wegener's, it's mostly my lungs that have been affected, with a first 'flare' 2 years ago, and another (milder) one about 5 months ago. Both times I got multiple pulmonary nodules & breathlessness. First time round, I had fever / sweats / weight loss as well. Both times, it calmed down on its own, including resolution of the manky bits in the lungs.
I've had no treatment so far, just a barrage of tests over the last 2 years, like I'm every doctor's pet research project - they all find me very interesting, and I've amassed an impressive collection of 3D imagery of my internal organs, but no-one can tell me for sure what's wrong with me or how it will or will not affect my life. The constant hospital appointments / scans / tests / uncertainty are really messing with my sanity. But I guess I should be glad that for now, I don't need immunosuppression (my heart goes out to all of you who are suffering so much worse that I have so far, some of the questions / stories here make me realise I've been lucky).
Anyway.
The thing that initially made me go to my GP 2 years ago was the fact that I got six episodes of migraine aura (temporary visual disturbances) on six consecutive days (I was also feeling a bit breathless and was getting what I thought was back pain - but I found the visual disturbances much more, well, disturbing). Migraine auras run in my family, and I had previously got them once or twice myself, but *never* six days in a row!
Last October, when I got my second 'flare', the same thing happened - I knew something was wrong when the migraine auras hit. They did an MRI of my head & there's nothing wrong with it, but x-rays / CT scan found the unwelcome return of the lung nodules, leading to the tentative diagnosis of lmited WG.
So. All my symptoms are consistent with what I've read about 'limited' WG, except for those weird migraine auras, which to me were the most noticeable thing wrong (losing your power of vision for 30 minutes every day six days in a row - not something you miss easily).
The docs just shrug their shoulders & stroke their chins when I ask about how the auras fit in with my diagnosis. (Actually, they shrug their shoulders & stroke their chins a lot whenever I'm around).
Does anyone else get migraine auras with vasculitis flares?
(Gosh - is this the rambliest question in the history of ever?)
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Anyanka
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I have cerebral vasculitis, so a different form of vasculitis. I've had an awful lot of migraine-like visual disturbances, with strange floaters, and wavy lines moving over my vision, and other things. Also spider-like effects. It's worse when the disease is more out of control. It was also bad when I was developing chickenpox.
I'd question whether you could have brain involvement. MRI scans are not conclusive, because small-scale brain involvement and lesions do not always show on them.
thank you for replying to my post. I asked my consultant about possible cerebral involvement in whatever version of vasculitis I seem to have, but he thought it was unlikely, as my symptoms are 'classic' migraine aura ('scintillating scotoma' with flashing zigzag lines expanding sideways from a central point, over 20-30 mins, before they fade away). He seemed to think that the vasculitis flare was merely acting as a trigger to my pre-existing propensity to get migraines (like other people claim their migraines are triggered by, I dunno, stress, or cheese).
It's all calm for the moment, so I'm trying to keep my worrying to a minimum. I was just wondering if anyone else out there had had similar experiences.
Take care, and I hope those visual disturbances leave you alone.
Not sure if I can help you but before I was diagnosed (Sept 2008) I was getting visual disturbances along with severe migraines. Neither of which I'd had before.
No one connected them to my diagnosis of CSS. Years later, I found out, by reading a medical magazine, that coronary issues can cause these kinds of migraines etc. At the time of diagnosis, my heart was badly affected, so this made sense to me.
I'm not saying this is what is happening with you, just something that you may like to consider.
thanks for the reply - it is an interesting one, as it seems I may not be entirely alone with these migraines after all. Yours sound a lot worse though, I'm so sorry you've been through all this. I hope things have calmed down for you.
Hi there. I too get flare ups of migraine with aura and also episodes of diplopia when my urticarial vasculitis/ lupus is going to flare. My migraines can go up to every 3 days for the aura with the headaches in between times so I pretty much get permanent migraines at that time. I'm seeing a neurologist in 3 weeks but I'm not optimistic that they will see the connection as last time I saw them they brushed it off.
Hi Lupylass - Permanent migraines, that sounds absolutely hideous. At least mine were 'silent' auras, with minimal headaches in between. Again, I realise how lucky I am to have gotten away relatively lightly in all of this, at least so far (fingers crossed!).
It's annoying when doctors are dismissive - do make sure they take a note of what you're saying, even if they think there's no connection.
The last doctor I saw, a rheumatologist who was supposed to look after me long-term, managed to reduce me to tears on both times I saw him. I've since asked to be referred to someone else, as I cannot deal with that man (and his giant ego). I'm not someone who is reduced to tears that easily, and I've never had a problem like this with a doctor before, but he was so contemptuous, arrogant and dismissive, spoke to me like I was a stupid 5-year-old girl (he actually called me 'stupid' at one point...).
Hi. I can identify with all you have said. I also have a diagnosis of limited wegeners. My first symptoms were blurred vision which went on for months. Hundreds of tests later, have brought about my diagnosis. In my case, I am fairly certain that the strange head, blurred vision etc. is due to ear problems and sinus pressure. I buy basic sinus preparations from the chemist and they seem to help when its not too bad. I also have a permanent dry cough, breathlessness which Ive had for years, mouth ulcers in the same place all the time, abscesses and itching scalp sometimes. Im 52. Good Luck with everything.
This desn't sound good. The term "Limited Wegeners" is fallinginto disrepute as it's like saying "you've got a bit of cancer". Some of the symptoms you describe suggest that it may not be limited. If you send me a message or email on john.mills@vasculitis.org.uk we could discuss.
Sorry to but in - I'm interested about 'limited WG' being a term that is falling into disrepute.
My rheumatology consultant (actually, my ex-consultant - see my reply to Lupylass above) told me he had seen patients with 'vasculitic illness' that sort of 'grumbles along for a bit' (his words, not mine), which in some cases went away again on its own, but in others led to a full-blown flare at some point. He reckoned there's no way to know which way it will go - I'm kind of struggling to come to terms with the uncertainty.
Also, I'm not quite clear at what point 'grumbling' turns into a 'proper flare' - I've had major organ involvement (multiple pulmonary nodules), and yet he called it 'grumbling'.
Hi Deb01, gosh, blurred vision for months, that sounds like the polar opposite of fun. As I said in a reply above, my visual disturbances have been very discrete events, sometimes happening frequently, but only ever for up to 30 minutes at a time. I can relate to the on-going breathlessness thing, though - my lungs have not felt normal at any time for the last 2 years, and I'm only 35. Take care, and wishing you all the best.
I've got TAK/GCA, and had very similar visual problems before I was diagnosed. I would be talking to someone and their face would break up, and I would be talking to a jigsaw. There was a mild headache each time, but that was all. Each episode went on for about an hour or so, and went if I took some paracetamol and roasted. I went to my optician who said my eyes were fine, and it was just a mild migraine - but I'd never had migraines, and been blessedly free of headaches. Unfortunately once I'd seen the optician, I never mentioned the is odes to my doctor, even though I continued to get them.
They stopped once I was diagnosed and put on prednisone. In fact, if you are diagnosed with GCA you are put on about 60 mg of steroid very quickly, as you can end up with real damage to your eyes. So it is probably really important that you talk to your consultant and get theses looked at more thoroughly? Good luck
Thanks BronteM. I've had my eyes checked, and a head MRI, and they couldn't find anything wrong for the moment.
What you've had sounds similar to me, though. It's weird, like your vision suddenly turning into some sort of avant-garde painting.
Actually, I liked your sentence with 'roasted' - with this drab weather dragging on, I really could do with some roasting myself, preferably on a tropical beach with someone handsome serving me a drink with a little umbrella in it... well, a girl can dream
In 2011 approximately six weeks after my illness started, and I had been hospitalised for tests, I experienced three short episodes of total loss of sight in my left eye over three successive days. A series of tests revealed that both my eyes were in relatively good condition and the 'verdict' was that some abnormality had occurred in the visual region of my brain. After Vasculitis was diagnosed I was prescribed Prednisolone (30mg) and Mycophenolate Mofetil (4x 500mg). In late May last year, when the dosage of Prednisolone had been reduced to 1mg, I experienced twelve successive bouts of migraine plus loss of vision in my right eye over a 24 hour period, something that I had never suffered before. Further tests showed that my eyes were OK.
Fortunately, touch wood, none of these symptoms have re-occurred since. .
Hi surveyor, yikes - twelve successive bouts of migraine. No fun at all. I'm interested that this happened both at the start of your illness, and when you started coming off the meds as well.
Glad to hear your eyes are ok, though. I hope everything continues well for you.
Have just found your question on here hence a late reply and Surveyor after what you have said about reducing your Pred. I'm certainly going to keep a close watch with anything to do with the sight in my right eye.
On 17th Dec '12, I experienced what I thought was a "silent migraine" - have had couple of these in the past but mainly suffered from full blown migraines - accompanied with a slight left sided headache and a dark grey shadow in the periphery vision in the left eye; I saw my optician twice and they could see nothing wrong with my eyes! On the 30th Dec - my birthday - awoke and after a hour or so I realised that the shadow area had gone but was replaced with a light grey area - by my nose this time - in the left eye; unfortunately had I known what was about to happen I may not had lost 60% of the vision in my left eye. Went to my optician who referred me to my local hospital and after 9 days as an Ambulatory patient, which included MRI (no contrast) they were working on an Intercranial Pressure diagnosis, CT Brain and Lumbar puncture but with an ANCA of 14 I was referred to Addenbrooke's.
Saw Dr Wilcox (Nephrologist/Vasculitis) and Dr Cox (Neuro)– both lovely ladies – and was admitted a 10 days later so that a whole raft of tests could be carried out; this time including another MRI with contrast this time around, which showed a couple of white areas. Whilst there one of the doctor’s thought I may have “grumbling” Vasculitis as I wasn’t ill enough and may have had a slightly raised ANCA for some time; confused I certainly am.
Last week I saw the Medical Ophthalmologist at Addenbrooke’s – Dr. Mayer – and he is unsure as to the whether I have Vasculitis or something else, as he found blood clots not only on the optic nerve - where this all started - but also in the ciliary vessels which actually feed the retina. So now I shall be having more tests on the 12th Apr to determine which diagnosis they’re going to go for plus see Dr Mayer after the test which means that I shall be late home that day; a week or so after this I shall then see Dr. Cox and Dr Wilcox a week or so later.
The good news is that ENT has discharged me - although the left "earache" which started after I reduced my Pred from 60mg to 40mg per day is still going on but not too bad at the moment because my Sciatic nerves have decided to join in on the act - and are a great deal more painful ? - so I'm now going to call my earache a "hot spot" and the Respiratory Clinic have confirmed that I do have Chronic Bronchitis, so at least that’s one confirmed diagnosis; sorry for the ramble but I don’t have anyone to talk this over with.
Anyanka, I hope you get sorted out and thank you Surveyor for your comments on what happened to you when your Pred. was reduced,
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