I’m new here. Just diagnosed with SVV, probably GPA.

[annv]

My diagnosis is based on symptoms, blood tests, and mri scan of brain showing several lesions. More blood tests to come. I can find references to most of the symptoms I am experiencing, but not the noises I have inside my head. They are like little explosions, happening irregularly, in more than one area of head, and worse when I get up after sleeping. Bit scarey. Anybody else had this?

[zoe69 Administrator Volunteer Vasculitis UK]

Hi,

I have GPA Vasculitis, but I only experienced headaches ( like someone was pulling out my hair) when I first got ill. Brain involvement is not common in this type of Vasculitis.

Is GPA suggested diagnosis from a doctor with Vasculitis knowledge?

[annv in reply to zoe69]

Hi Zoe,

Sorry you have GPA. Thanks for replying. As briefly as I can, have been feeling ill for four months with strange collection of symptoms - - tiredness, sweats, dreadful sinus, nasal crustiness, nose bleeds, nose changing shape, nose hurts to touch, upper teeth painful, continuously croaky voice, headache and shooting pains in temples, prickling scalp, sharp earache, dizziness, overbalancing, walking into things, dropping things, cognitive difficulties, prickling and pain in legs down to feet, loss of bladder control, blurry vision, red eyes, xanthelasma, small purple spots on torso, etc etc. My body has turned into a complete alien.

I finally went to doctor with PMR pains of neck and shoulders, was started on 40mg of prednisolone, they disappeared overnight, but other things still didn't seem to feel right. So then I started reading .... As soon as I came across the nasal etc signs of GPA they really seemed to fit, but I wasn't sure about the other stuff I had. Back to GPs (three times), who weren't interested. Woke up one morning feeling really ill so went to A&E. The clinical assessment unit ordered MRI scan and blood tests.

Scan showed multiple lesions in brain, blood tests unremarkable. A&E doctor diagnosed SVV. I asked about GPA and was told that my ANCA was negative, so definitely, absolutely definitely not. I now know that this is not necessarily true, the picture is not always that clear. This is both from reading and from a long conversation I had with John Mills of Vasculitis UK. He also told me he thought it likely I had GPA and should get referred to a specialist unit urgently. Which is what I've been trying to do for weeks!

And I'm still not getting there. The A&E doctor is now testing for lupus etc, all very well but I just want to get referred. And those results won't be back for over another week yet. By which time it will be five weeks from when I went to the doctor and I'm still not where I want to be. A familiar story I think from what I have read. What a scary business this all is.

Two good things, my kidney blood test was clear, so that's a relief. And I have by some miracle managed to get a gp appointment tomorrow morning so I am going to ask them again for a referral, now I am better informed.

Wish me luck! Any advice you can offer before seeing the gp would be gratefully received. Sorry this is so long.

Hope you're enjoying your Christmas.

Best Wishes

[ZiggyDiego in reply to annv]

Have you had your eyes checked out by an ophthalmologist? Important and it might help in your efforts to get proper help, if they can detect inflammation causing your red eye. Good luck.

[annv in reply to ZiggyDiego]

Ziggy, sorry to be slow replying. Yes I have been to opthamologist who says no sign of immediate threat to my sight, thank goodness. Have seen gp twice more and had yet more blood tests today. The hospital has not yet reported on the blood tests they did over two weeks ago. So still waiting, and worrying, with no movement on being referred yet.

[ZiggyDiego in reply to annv]

It took four months for me to be diagnosed. Two years on, that doesn’t seem so much time. But at the time it felt like forever. Hope you get sorted soon.

[AndrewT]

Dear annv,

First of all....A, very Big, Welcome to you annv. I don't have, the same condition as you, but, in general terms, 'Noises' in the ears are usually caused by, often sight, Damage to the Middle ear. That, part of, the ear contains 'Hair Like' Receptors, that Vibrate, as sound Moves the ear Drum. Even slight Damage, to these 'Filaments', can cause you to 'Hear' Strange 'Pops', Whizzes', 'Bangs', and yes, 'Explosions'. There is a, very good chance, that, your Condition, HAS damaged them.

All that said, I would get this Checked Out, just 'In Case' it IS more serious (which I doubt). Ask, your GP, to refer you to the Ear, Nose and Throat (ENT) Department, of your local Hospital- unless, your GP, Surgery can do this themselves. Otherwise, you can Listen to Music, the Radio and so on. I'm afraid that, assuming I'm right here, that your 'Stuck' with it annv. Sorry about that- If it's, any consolation, I'm 'stuck' with it too!

I'm sure that you Are 'Fine' annv but, just Check, to be sure.

Have a Happy New Year 2019, Kindest Wishes

AndrewT

[annv in reply to AndrewT]

Reply very helpful, thanks. Sounds a likely explanation. I am desperately trying to get all this checked out. I have seen four GPs within my practice, and the acute medical team at the local A&E twice, but six weeks into first presenting myself I still have not got to any sort of consultant. I cannot believe how long all this is taking. I always thought I was quite good at getting things going, but this is like wading through treacle. Not helped by the NHS partially shutting down for two weeks over the 'festive season'! I am really worried permanent damage is being done. Another GP appointment tomorrow. Fingers crossed.

[Christophene47]

I have sounds in my head constantly. It isn't a hearing problem. Sometimes it is louder than others. It could be tinnitus, giant cell arteritis ? ,or a side effect of a medication you are taking..I notice too, it is loudest upon awakening.

[annv in reply to Christophene47]

Your message is so reassuring. I have been thinking every ‘explosion’ is a bit more of my brain being destroyed! Thanks for the help.