My Campaign

[jor]

I started suffering with severe "vertigo" some 18 months ago.

I, had a difficult battle to be taken seriously by my GP, who told me it was an "inconvenience" and at one point even laughed at me.

I had to be quite difficult to eventually get a referral to an ENT consultant, who initially misdiagnosed BPPV.

I knew it was a misdiagnosis at the time to be honest. They were running 2 hours late, it was my first appointment and I could tell he just wanted me out of the way.
My symptoms didn't fit, but he wasn't listening, and I came out and cried.

I had been posting on a Meniere's board for some time, and though many of my symptoms matched perfectly, so much didn't fit. I didn't get the big "spins" that you guys suffer from, mine was more a permanent state on being unbalanced, if I sway it is forwards and backwards, not side to side. I have tinnitus, but no hearing loss.

These symptoms that are unusual for an ear related issue, were not considered.

So I had to wait a further 4months, suffering unbearably as there was no medication I could take for BPPV, just the exercises, which surprise surprise didn't work.

My next app, with a different consultant went better in that I was listened to, but absolutely broke me. I was expecting to be sent for MRI & balance tests as in my head I had Menieres, but this consultant told me that from my symptoms, he was 99% certain I did not have an ear problem, but a neurological issue. He ordered an emergency MRI (5 days later) and told me to prepare myself for a "serious structural" problem - MS.

I had my MRI, but the appointment didn't come through for the results until 3 months later. I didn't push it as I presumed that meant it was good news and sure enough, my 3rd ENT appointment with yet another consultant confirmed it was clear, but that they were still sure it was neurological and referred me on.

3 months later I saw my 4th consultant and was diagnosed with Migraine Associated Vertigo. I was given a prescription for topiramate and sent away.

Since then I have tried desperately to get support for this from my GP, but they do not understand how to manage balance disorders, they keep trying to get me on anti-depressants or sign me off work. They cannot understand, even with a dignosis, that I am NOT MAKING IT UP!!!
They do not know how to look after my medication, and my GP actually overdosed me on it at the start of the week (I ended up in A&E)

SO I am now campaigning for funding from the government, for training for GPs in the identification and management of balance disorders, and the setting up of specialist centers in all major cities across the country.

Please join me in raising awareness

Jo

[Barbara]

I can well understand your frustrations Jo as many of us have been down the 'Go away and live with it' route. It took me 3 consultants before I found the right one for me but luckily I had a good GP who listened and was happy to refer me to the guy I asked for.

There are others on here who have MAV so you will be in good company.

Barbara x

[Gibson335]

Already done so from the other forum, Jo. Will watch keenly how this progresses. Behind the scenes I've been tackling a couple of information websites about the language they use when describing symptoms, challenging their viewpoints. One of them said they would adapt their information slightly, but commented that they had to have only evidence-based information on their site, not what they were told by sufferers. Whilst I can understand that, it's typical I'm afraid that the experiences of sufferers are so often overlooked. The challenge, indeed, is to improve that evidence base.

[jor]

That's really interesting Gibson, would love to know more about how things progress for you with that.

I am very determined, and though I know it is going to be a massive uphill battle ( very few petitions reach the 100,000) I will do everything I can to get it up there.

Any information you may, statistical or otherwise would be really helpful. Or any contacts you have built up that would be useful.
I am in touch with the Migraine Society and working with them to try and join up on this one, it is easier for me to start with this one with Migraines being my cause, I can talk more confidently, but I intend to move on and link up with the other major society's.

Thanks for your support, any ideas would be great!!

Jo

[Barbara]

I have posted the petition on www.facebook.com/dizzinessblues
Although an international site I have asked UK members to sign.
Also posted on the fb. Sound Bites site.
Hope this helps.
Barbara x

[Barbara]

Hi Jo,
You could also try posting on some of the tinnitus sites.
Barbara x