Thank you for your lovely reply...sorry for the delay in responding but I spent a rollercoaster 24hrs with the medical profession and the varying opinions!! It has made me realised how complex this illness is!! I wanted to update you -
When I posted it was around 9.30pm here in the UK so I phoned the Out of Hours GP service we have here to ask for their opinion as a trip to the bathroom left me needing to lie down for 20mins to recover - she was lovely, very interested in asking about MG and admitted she knew little about it. She said it sounded like my chest and throat muscles were fatiguing and my voice was audibly weak. She said all she could offer was a GP visit which would listen to chest to rule out infection and do a pulse ox which we agreed was probably not helpful. By the time I got the call from her (you have to call in to a triage service and then they get the Doctor to call back so I had been lying down for a good 30mins) the symptoms had eased, as they do if I get the pressure off my body. She was reassured that I wasn't breathless and said it sounded like my postural muscles were fatiguing so if I was happy to stay lying down as I was going to bed she felt admitting me at that time of night would be more fatiguing for me but I should ring my Consultant secretary first thing and ask to speak to his senior registrar and see if they could perhaps prescribe some steroids until he came back.

I did as she said and my Neuro's registrar was lovely - she asked lots of questions and said she would not be happy to prescribe steroids without seeing me, she felt there needed to be a plan in place for me to see a local neuro for emergency treatment as being 2hrs away was too far, she said my voice sounded weak, I was clearly unwell, I should not be alone and I needed help. She said she would text my neuro on his holiday to check but she would want to see me and possibly admit me as soon as I felt I could make the trip......as you can imagine, I was getting worried now!!

She rang an hour later saying she couldn't contact my Neuro but she felt I should come up to her and be prepared to be admitted. She was reassured I wasn't breathless but said things could change very quickly and someone could have minimal symptoms one minute and full blow crisis the next. So I started making arrangements to go when my neuro rang....this is the first time he seemed off, he started saying how he would not prescribe steroids without the SFEMG as it was too risky as we had discussed, I reminded him that he had also said a negative SFEMG would not change my diagnosis or my treatment and he said he felt my case justified steroids but that a positive SFEMG would be helpful to support the diagnosis (which I agree with unless I feel like I did that night!!) He seemed to be reading from the notes he made on our last appointment (as he was started off saying how how he wasn't charging me that appointment which seemed irrelevant to this discussion but was the first thing he wrote on his notes that day and the rest followed in the same order as we discussed it that day) this may explain his off-ish-ness, or that he was in work on his holiday, or that he didn't appreciate his registrar wanting to admit me?! OR just a bad day?! He did seem to soften towards the end and said he would push for the SFEMG as soon as possible but it would still take 4-6 weeks and in the meantime I should go to my GP for medical assessment and they should contact him of they have concerns or want to admit me - BUT he felt that as I was describing pressure on my chest and a stretching feeling at the base of my throat this was not really consistent with MG as it does not cause discomfort?? Yet, his registrar was very concerned by the exact same symptoms??

So feeling very confused and like I'd made a nuisance of myself I rang my GP - they said they felt it was something very specialist for them to be looking at but got me in straight away. The pressure thankfully was not as bad as the night before and I could stand a little longer, the tests showed nothing but he was concerned at how pale and ill I looked and thought my 90mg of mestinon 5xper day was a massive dose especially as I'm only petite, he sent me straight to the hospital for assessment and investigation for a thymoma which he said could be pressing on something. It took 5 hours at hospital for bloods, ECG, one breath Spirometry test, oximetry and chest x-ray. They were all lovely and saying how rare it is and I was welcome there for assessment anytime as it must be a worry as anything could trigger a crisis. Thankfully everything looked reassuringly good....although I know the pulse oximetry is no indicator for MG!! They have referred me for a CT scan asap to double check for a thymoma despite the x-ray looking clear....I'm not sure how likely it is for it not to show up on x-ray and then show up on a CT?? Do any of you know??

So, I went home at 10pm last night exhausted and confused by the whole rollercoater!! I woke with very little voice this morning and it feels as though I strained it having to talk so much yesterday whilst it was already so weak and my chest muscles feel pretty sore too especially when I breathe!! I have decided to drop my mestinon to 60mg 5xper day as I seem to have gotten worse and worse on the higher dose - the lower dose had become less effective but I felt nowhere near as ill as I do now! So, fingers crossed I feel better in a day or 2!! Maybe I've had a virus, maybe the higher dose made me worse, or maybe the MG is flaring.....I honestly feel bewildered by it all....and a little hurt at my neuro as he's always been so caring before?! I don't know whether he thought I had phoned asking for steroids but I only said that the out of hours GP had suggested it?? I don't know?...and as you know, I tend to be a little sensitive and beat myself up over the way Doctors are! I also had a withheld number call my house and mobile right after the other at 11am this morning and leave no message which was one of the appointment times his registrar had given me and I wondered if it was her as no one really has both numbers except my Doctors and family. It's probably nothing, Who knows?!

Thanks again to you all for your reply and support - it really means so much to me!! Let me know if you have any thoughts on this? I just feel completely confused with the mixture of concern and dismissal over the same symptoms!
Eve.x