Hi everyone....I know I haven't posted for a while, I've been trying to make the best of life and not dwell on things...if that makes sense!!

For those who don't know me or remember, I am seronegative for both AChR and MuSK and EMG and SFEMG did not confirm my diagnosis either! My (second!) Neuro kept his "Clinical Diagnosis" of MG but refused to treat beyond Mestinon. Thankfully my GP put me on Prednisolone in September...a month on 25mg had me feeling better than I have in years and greatly improved all of my muscle weakness....I found things easy I didn't realise had even been a problem!! At times I even forgot to take my Mestinon as I was feeling so good...until my face started drooping to remind me!

Then, my GP took advise (not sure form who?!) who said I should be able to drop 5mg per week once stable (a very quick taper, I know! But I didn't want to rock the boat with my GP who's trying to help) Once I went below 20mg per all the symptoms crept back in, I was no longer stable and mestinon struggled to work efficiently. My GP said this was more evidence that pointed against the MG diagnosis? I was confused! Thankfully the Myaware people set me straight on that an advised me to go back up to 20mg per day and see a Neurologist ASAP. This is something I am not keen to do, and I am not keen to upset/offend my GP as he has put himself on the line by giving the steroids and I don't want to appear ungrateful or like I don't appreciate it?? But he admits he knows very little about MG?? He is happy to refer me on but with all my tests not showing anything he feels I will end up back with him no further forward....and we all know that he's probably right unless I can find that one consultant who is a needle in the haystack who would treat on clinical symptoms!!

As it stands my GP wants me down to 5mg per day ASAP but has said I can do it slowly as I feel ready in 1mg drops (after I gave him some information from the Myaware website) so I am on 17mg but as last time, anything under 20mg doesn't control it...20mg feels like I am just beating the symptoms as long as I'm careful not to over do it! I have started writing to Neurologists all over the country to see if anyone would be willing to consider treating me beyond what I already have and in the hope they may firstly actually reply to me and secondly, review my results and see something!! Though, I am definitely too experienced in all of this to be getting my hopes up!!!!

One question I have....does anyone feel like everything gets to them...people, noise etc! I'm not sure if I am on a short fuse because I am just so frustrated with the one step forward two steps back and all of the uncertainties? I am very frustrated to have a glimpse of life back and to now be struggling again!! I am also aware that pred causes mood swings but I was feeling a little like this before starting them - maybe they are making them worse?? At times I just want to be on my own, like I can't cope with anything else beyond trying to live day to day and take care of myself, the house and my family...all of which I do to a very basic level and I would love to do so much more!! I love have everyone at home on weekends, but sometimes the constant noise and needs of feeding, dressing and entertaining leave me feeling overwhelmed and snappy! The strange thing is, if I can sit down and get some strength back, I feel much more able to cope...maybe I am trying too hard to be "normal" and putting too much on myself?? I suppose if someone had flu for a week they would feel like they just needed peace and wouldn't tackle extra duties... and our bodies feel heavy and unresponsive everyday...so perhaps it is understandable? Can anyone relate to this....or am I just turning into a naggy cow!! haha!!

Thank you all!

Hi, Unsure

It's nice to "meet" you-- I'm a fellow seronegative I think (I haven't gotten back my MUSK test but all the others were negative). My neuro seems convinced it's MG but I'm afraid he'll change his mind if none of the tests come back positive.

I do feel really overwhelmed right now. I don't know if that will be normal all the time or if it's just because this is new. I'm finding that it helps to just go to a quiet room and lie down for a bit in the middle of the day when possible. I don't like doing it, but I can't deny that it makes things easier. It sounds like you're having a similar experience.

I hope things start looking up for you soon.