Hi,

Thanks for your replies. You guys say it sounds like a horror story, yep it is and I haven't even told you half of it! Like being given the answers to an eye exam as I couldnt read the board due to double vision.

Yes the records here are electronic so whatever the esteemed medics see fit to put in your records are carried with you for life. So now Im a fruit loop hypercondriac! That can hold her breath for so long I can decrease my Oxygen sats levels to 50% and set the pulse ox alarm off. You have to laugh as you just cant make it up.

Today I have woken up and can barely walk. Now most normal people when this happens would ring 999 or 911. Me however, when I tell my GP when he returns my call, he wont do anything.Apparently its acceptable for me to not be able to walk. If he suggests hospital theres no point as nothing will be done until Tuesday when my consultant is in next.

Plus I dont know if you are aware in the UK no one is allowed to get sick on a friday or weekends. Friday is turfing out day to make the wards easier to manage over the weekend as there will only be one dr for over 200 patients and a small amount of nursing staff. The Dr will also be a student with no knowledge of MG and will rely on pulse ox info for oxygen saturation instead of arterial blood gasses and spirometry. I know this as I have been unfortunate enough to spend the weekend in the place! The ER /A&E dept is good....until they read your notes.

Thanks for the suggestion of the MGA. Im sorry to say I find them pretty poor in comparison to this site. When I have had a rant of the forum, I have been told that if Oxford say you haven't got MG then you havent got it and they wouldn't say you were depressed if you weren't. Unfortunately the MGA is very pro doctors and if you say anything negative about them, you get a tirade of pro medical comments.Whats more irritating is when you read these peoples stories they themselves have been treated poorly, they seem to think that this is acceptable though. (I do have a low tolerance threshold for the medical profession due to the way they treated a relative of mine who had M.E. She suffered with fits due to the illness, she had such a bad fit one day that she fell and was left on the floor by the caring nursing profession as her illness was all in her mind and she would get up when she got bored. How vulnerable you are when you fall sick. I dont doubt that there are some wonderful staff out there. There is one on the ward that I end up on at the local hospital, who believes that I have MG and knows that Im sick. ) What these people (mg forum on MGA) seem to fail to realise is that I saw a specialist in MS at the MG centre of excellence! They also were not a specialist in mental health, therefore unqualified to diagnose depression from a 6 minute consultation where they even failed to take an accurate medical history.

I see a neuro-opthamologist, my droopy eye is fatiguable and I can not sustain an upward gaze in either eye without my eye lid closing. Its a great party trick but it left me with both eyes shut for two hours! Not very smart.

Erin, yes I do get headaches when my ptosis is prolonged, like at present, my eye has been shut for 13 days, my forehead feels like its being ripped in half as my left frontalis muscle is over compensating and making my eyebrow arch in surprise constantly. I also get pains in my eyes like eye strain.

Do Drs in the USA or elsewhere insist that MG has to be bilateral when it comes to Ptosis? I came up against this in Oxford and local hospitals. Mind you in Oxford they told me prednisolone wont stop your periods yet the patient information leaflet clearly states it can stop your periods. What did I say earlier about not being able to make this stuff up!

Im loath to contact Angela Vincent due to her connections to Oxford. I will have a really good think about it.

Thanks again for all your support and suggestions, I really really really appreciate it. Sorry if I come across as a miserable so and so but Ive had enough!

Cheers and have a good weekend,

Rach