Hey guys

I just went to my doctors as usual and it was such a struggle....it was a fight just to get the doc to show any interest in helping.

I am currently waiting to be referred yet again to another consultant and since I haven't heard anything...I was told to go back to the docs and tell them.

The doctor I saw was basically very laid back and infuriatingly said 'its only been 3 weeks since the first letter...maybe they don't think its nessacery to see you since you've seen 2 other ENT's' I could feel the tears well up in my eyes. My mum intervened and said that neither ENT's did any standard tests and even my normal doctor felt it was appalling. He replied by saying 'well...what other tests are you talking about?' as if to say I was clueless.

I tried to get a referral to a Neurotologist at Queens Square..but he said he wasn't willing to..and I had to wait to see if this ENT would see me.

Me and my mum were furious but we got our point across that this has gone on too long and nothing seems to be done.

Sorry to offload this on you guys...I just didn't know what to do...I feel stuck again...like I'm no closer to getting better.

Kelly

Hi Kelly,

Im really sorry you had a bad doctor visit- I have had so many of these visits. Mine was not too bad yesterday, I dont think I will get a referral but he did say he would look into it. Ive found the more info you go in with and challenge them the further you get. I went on about neuro otologists yesterday and it was obvious my doc didnt have a clue what one was but I think he is starting to respect the fact I probably know more about dizziness than he does now and ive certainly seen a change in his attitude to me.

Is there a different doctor there you could maybe see next time? They make me so mad, if only they could experience what we are going through they might have a bit more compassion and try to help us.

Dont give up, keep pushing and dont let them wear you down.

Chris x

Thanks Chris! I'm glad you're appointment went a little better :)

I actually see a doctor there that really understands me and gets things done but he's not there this week.

You know you said about going in there with info...the doctor I saw hated it when I got my neurotologist info out...some doctors don't like it when you do their job.

All I kept saying to him was that I couldn't put up with it for much longer because its already taken over 5 months of my life...and thats not including the previous ear/dizziness problems before that.

Sometimes I could just scream at these doctors.

I will keep my fingers crossed for you Chris...don't give up!

Kelly

Hi Kelly and Chris.

As you prob know by now, I too had probs getting my referral to a london. It has taken 6 mths but I have finally got there. My GP also didnt really know much about neuroto's but she was godo at putting my case forward to the PCT who have finally approved it. I sympathise as I know what a battle it is to get a referral outside your area esp to london if you dont live near london. I wish you the best of luck - and the one bit of advice I'd offer - is visit or phone ur GP every 2 weeks so ur referral sticks in their mind.

xxx

Hey

I actually live in London....so you'd think I had some sort of chance...but these silly doctors don't seem to realise that its our lives that have come to a full stop...if they don't have to suffer..its not a big deal.

My doctor made it sound like the ENT's had done everything they could..and it was the total opposite way round. Then he said that they had written lots of letters to this consultant and it may be that they don't want to give me another appointment. So I said 'well..they obviously don't think 5 months off work and a crippling condition is serious then'. I could have strangled someone. Sorry..I'm letting off steam :)

It seems that no matter where you live or what doctor you have..its always some sort of struggle.

Anyway take care and thanks for the support!

Kelly

Oh, how annoying! I've had the same - it's like talking to a brick wall. If they could experience five minutes of what we go through 24-7, they'd soon change their tune.

I ended up writing my GP a letter and enclosing an article written by the neurootologist and vestibular physiotherapist from Leicester balance centre, which describes these weird symptoms really well and makes the point that they're not psychological. The article was in the Winter '99 newsletter for the Meniere's Society ('Spin') and they'll send you a free copy if you track them down on the web and contact them. Might add a bit of weight mto your case? I still had to see LL privately because the health board wouldn't find it, but at least it got the referral written!

Don't give up. You will get there! It's utter madess that you're in the same city as LL and you still can't get a referral, but keep at them until they get sick of you.

Ann

Thanks for your encouragement Ann...I will keep going on at them.

Kelly

Hey all, just adding my moans about GPs - Had an appointment yesterday and he won't entertain the idea of referring me to a neurotologist as I'm outside of London and there are none in Scotland. He says the ENT would have to refer me once they'd exhausted their expertise and done all the tests...

I'm waiting for the next set of tests at the ENT and the referral letter said the waiting time - just for the next test - is 80 weeks. 80 weeks!! what use is that! Well I've been waiting for over 52 weeks now, so hey what's another 30..GRRRR. sorry vent over. thank you for listening.

OMG! 80 weeks??? Thats a joke! They expect you to continue suffering for all that time? How dare they? How ould they like it if they had to suffer?..I'm sure there wouldn't be an 80 week waiting list. You have a good moan...you've got every reason too.

HI GroovyK,

Just to say - if you usually see a doctor who is more sympathetic then definitely go back and talk to them. If you find a GP who is understanding it's often best to stick with them, they get to know your case and you and it will often get you further when it comes to referrals. If you're in London, then you can be referred, it's as simple as that. My doctor referred me - I don't know what strings she had to pull behind the scenes - but it all happened very fast. I asked and she did it soon after. I actually told her the truth which is a friend of mine who lives nearby - someone I was introduced to after I got dizzy - had been referred by their doctor. My GP didn't know what a neurotologist was, but she is basically nice and understanding, this is not true of all the GP's in my local surgery - some are awful. If you ask the wrong one my guess is you'll get nowhere.

Chris,

Really glad to hear you gave it your best shot with the GP - really hope it works out for you.

I realise financially this is off limits for many - but with regard to a request to see a doctor provately, they pretty much have to refer you, I don't think they have any choice, you're paying. I didn't go privately, but the one up side of being seen in a neurotology department privately is that there is a limit to the amount of tests (and therefore cost of tests) that they have to do. Also, they tend to diagnose and prescribe treatment on the day of the tests, so the costs don't build up too much.

best,

hbep

hbep

Thanks for your help. Unfortunately at my doctors..theres no gurantee that you'll see the same doctor. When I went today I asked if my normal doctor was in and was told no...so I just went ahead and saw this other guy.

Kelly