Oh no! What happened? I was sure you'd get a good outcome with the Neuto-opthalmologist especially with the hot weather we are having here at the moment - I know my eyes are pretty droopy at the moment! What did he/she base that diagnosis on? How could, and more importantly WHY would anyone want to "put it on" ?!?!?! Especially as a woman - the facial and eye droop are a difficult sight to behold everyday when you know this is not how you normally look and definitely not how you would like to look!!

I am so sorry, you must be so upset and hurt right now - this treatment is just not fair

I am just beyond upset at the moment.

The guy was just rude and arrogant. The more tests he did the worse my eyes got to the point where he was having to hold both my eyes open.

Basically the attitude I got was "you're wasting everyone's time you haven't got mg get over it"

Kept making big dramatic sighs whilst filling out my notes. Said all my results contradicted each other? But didn't explain any further. Told me as I had been extensively tested for mg between 2007-2009 I couldn't possibly have it and the consultant I have for Pots would have to deal with it.

I am just crying as soon as my husband is out of sight because we are both so sick of this.

Just said he had no idea what is was and goodbye.

Whilst doing the exam he kept trying to catch me out by dropping the lid with ptosis and of course my eye closed.

What annoyed me more was the nurse who did the first exam noticed I'm holding my head funny to try and see and when I look at something close up my eyes actually move to the wrong side instead of going towards my nose they go outwards. But apparently none of that matters?

I give up, wtf am I supposed to do?

Rach x

Sounds like a real jerk. Sorry to hear this. I sure wouldn't go back to him. You're going to have to keep doctor shopping. This one is a lemon.

I am so sorry that you are going through this - how are you feeling today?

Is he basing his findings on a lack of a positive MG test? Did he discount it because you have been thoroughly tested and not produced a positive DESPITE having clear symptoms? Surely they would not have tested you so thoroughly if you were not exhibiting definite MG symptoms??

Would it be worth writing to Angela Vincent herself? Maybe explain your story and see what advice she may be able to give? You could be an ideal candidate for her research as you have clearly had many Doctors suspect MG but just unable to prove it? This is my Plan B if all else fails!

Is your GP willing to refer for a second opinion? How do we stand on out of country referrals? I sometimes think the UK doctors are too regimented and reliant on tests which even they acknowledge - are not 100% specific or sensitive! The Mayo Clinic in America seems to be mentioned a lot on here?

I hope you're doing ok today, I know it's easy to say but don't give up - we are all behind you and you deserve to have the help you need to live your life.

Good luck and thinking of you.
Eve.x

So sorry to hear this. HOW in the world can you possibly fake an eye or face droop? And my neuro-opthalmogist and his assistants always look at my double vision through prisms and assess it that way...so you can't just say you see double without them being able to confirm it! and I understand it's from weak muscles that don't track with each other; they can see that too by testing with having you follow a light.

Keep your serenity prayer in mind and keep that wonderful sense of humor--it will get you through this!

Hope you can find a better set of doctors.

Susan

Hi,

Thank you for your lovely posts. I needed a few days away from it all to re group.

I think their reasoning behind no more mg tests is that I've had at least 4 blood tests, 4 sfemgs etc etc between 2007-2009. So therefore in their eyes it just isn't mg.

I wrote to Angela Vincent in 2009 but she couldn't help me.

I've had 2nd opinions and more, unfortunately it seems here in the UK unless you have at least one positive test you can't possibly have mg.

I've told them the ptosis resolves with the ice pack test - they've seen it, it also resolves with mestinon and again they've seen it. However their answer to that is that I make it do it, because I believe it works. How can you argue against something that illogical?

I have no idea how I manage to put this on because believe me I would stop it in an instant! I am a youngish woman I find it incredibly disfiguring, why would I want the negative attention?

I am really stuck for ideas and I'm all out of fight at that moment.

I proved with prisms I have double vision when the nurse did the first lot of testing it lasted around 30-40 mins. I then had more tests with the dr .

Yesterday for the first time since June 10th (this year) I had no ptosis or double vision. Today its back with a bang!

I just wanted to let you all know I'm OK and to thank you for your supportive words

Rach x