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 Confused-Mixed messages

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mrswallet
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PostSubject: Confused-Mixed messages    Thu Jan 17, 2013 9:10 pm

I haven't really posted on here although I do check in every so often. All I'm really after is some advice.

So I went to the GP in November with palpitations and dizziness and after multiple tests and a LP I was diagnosed with IIH. The hospital then referred me to Neurology and to wait to see them.
The appointment came through for New Year's Eve, so off I went to Neurology. All this while I have continued to have the headache and the dizziness.Upon arrival I was told that the doctor that I should have seen had called in sick and that my appointment should have been cancelled but as I was there they would see me.
I saw a junior doctor who took some details and then went off to speak to another consultant. He then came back, after a 45 minute wait, asked me three questions, looked in my eyes, told the junior doctor that there was something behind my right eye, nothing to me, then said that IIH was incredibly rare and that I couldn't possibly have it because I didn't have papilledema, and that I needed to stop taking the painkillers, lose weight and come back in two months.

He made me feel that I had plucked the idea of this out of thin air and that I had made it all up.

I'm so confused, does this mean I don't have it? Will I go back and they tell me I do?

All the while, I'm still having the headaches, and the dizziness, and the whooshing in the ears, :(

I'm sorry for the long rant but I didn't know where else to go.
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medmisfit
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PostSubject: Re: Confused-Mixed messages    Fri Jan 18, 2013 5:40 pm

Rant away, we've all been there! No, the opinion of one neurologist doesn't negate all of the test results and original diagnosis. You CAN have IIH without papilledema. Losing weight doesn't necessarily affect IIH, but has been know to help in some instances..it's always a good idea to be a healthy weight, but not always easy when you're not feeling well.

Would it be possible or beneficial to reschedule with the original neurologist? I would start keeping a symptom log (example in the Useful Guides and Print Outs section) and try to reschedule. I know I had a horrible experience the week of Christmas, but went back last week and it was much better. They apologized and explained they were short staffed for holidays, so people familiar with IIH and procedure I needed weren't available..maybe it will be the same for you. Regardless, it never hurts to have a second opinion. Maybe your GP would be willing to help manage IIH until you can get another appt, if you have a good relationship I would start there.

I know it's frustrating and unnerving, but it's not out of the ordinary..take care of yourself and hang in there!!!
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Julie
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Heidi
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PostSubject: Re: Confused-Mixed messages    Fri Jan 18, 2013 8:51 pm

I agree with Julie. There are medical articles the validate that you can have IIH without Papilledema. We have a link to an article on this site which you will find in the vision views section, and you can download it and print it out for use when you next see a doctor.
You have NHS Patient Rights and they have a duty of care to you which is not being met. You can either contact the consultants secretary who you are under at the hospital, and discuss this with her and ask for another appointment, or contact PALS about what happened at your appointment and explain to them that you are not happy with what was said, and you still are experiencing symptoms. They will be able to help you with advice and a new appointment with a Neurologist. This is what PALS are there for and they are very helpful, I've used them myself when I've not been happy with a Neuro appointment.
Stick to your guns and if you get no joy then you are within your rights to make a complaint.
Let me know how you get on.
Heidi
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mrswallet
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PostSubject: Re: Confused-Mixed messages    Fri Jan 18, 2013 9:11 pm

Thank you for your replies. Nice to hear that I'm not going mad lol.

I do have another appointment scheduled with the original Neurologist at the end of February, so hopefully will get more joy there. In the meantime I am being monitored and managed and supported by my GP who is absolutely fantastic. So hopefully she will be able to keep me going until I get back the hospital.

Until then, I will certainly think about keeping a symptom log so that when I go back I have something to show them. Also I will continue to face it day by day and try to remain as positive as possible.

Thank you x
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Wylee
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PostSubject: Re: Confused-Mixed messages    Sat Jan 19, 2013 2:31 am

Sounds as though you are on the right track. I do not (and never did have) pap. My eyesight was never an issue (except the seeing double part which was aggravating, not vision threatening). My issues were the headache and dizziness. IIH has many "basic" symptoms, but it sure seems like each of us have it just a bit differently.

I would highly recommend that you not see the doc who said you can't have IIH without pap. That one needs to go back to school!!

Hang in there, keep that symptom log, and try to keep well.
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mrswallet
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PostSubject: Re: Confused-Mixed messages    Fri Feb 15, 2013 7:47 pm

Hello everyone.. Hope everyone is doing as well as possible..

Well to update my story, I've been signed off work for a bit due to the horrendous headaches :( but there has been some positives.
I went to the optician to buy some new glasses and they found a swelling behind my eye. So off to the hospital I went.
Cut a long story short, have seen the Neurologist I was scheduled to see originally, who was lovely, told me the original diagnose was right and started me on Diamox and have been booked in for another LP.

So I just wanted to say thank you for your kind words, they really helped.. Also it is so nice to be believed.

bhug
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Heidi
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PostSubject: Re: Confused-Mixed messages    Fri Feb 15, 2013 9:13 pm

That is FANTASTIC!! hug I am so pleased that everything has worked out, but what a shame it was only because you, like most of us decided to go to the Optician, who always seems to know more than the doctors when it comes to IIH. We hope to change this in the future which is why we are conducting surveys on the diagnosis process.
Please do keep us updated and we look forward to hearing from you.
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