Hi everyone - I am sorry to pester and I know I have probably asked similar questions along my way but I am just trying to piece everything together and work out my next move and could really do with your help/thoughts/advice!

I have had a reasonably good couple of weeks (which has been lovely!) its been a long road back from my flare up in February and I have been taking it slowly. I wanted to give the Doctors battle a break and just do my best with Mestinon as they don't seem happy to offer me anything more with having no tests to back up my Clinical Diagnosis...but I feel like I am on the verge of going back downhill and may have to reconsider that decision! It was half term last week and I had my girls off with me, (full of colds!) and whilst we didn't really do anything, I did end up arranging a couple of playdates and a trip to the park on top of what I normally do so, (as depressing as the thought is that something so simple could have had this effect on me!), maybe that explains things?! I hoped a couple of days rest now they are back at school might nip this in the bud...but so far it seems to be taking it out of me more than I hoped and I am having all of the symptoms I had before my last flare up

I wanted to ask what your honest opinion is on these symptoms - are they MG or the signs of a worn out body...or should I be looking at something else to explain this??

Here are the symptoms - I would be so grateful for any thoughts on what you think about them??

Headache - pressure type headache (similar to when I had viral meningitis) relieved by supporting head. Light and Strong Smells almost "go through" me and I want to avoid both!

Neck also aches later in the day.

Pale (Deathly at times!)

Loss of appetite

Nausea

Chest pressure and feeling of more rapid heartbeat on standing/moving around (thankfully it is pretty mild at the moment!) - relieved a little by sitting but lying down is better and a huge relief - being upright feels like a huge effort and the sofa is my friend!!

Blurry vision - worse than usual and reading/computer/watching TV feel draining/an effort and make the headache worse!

My Legs are always easily tired and become heavy with fluctuating problems walking, but when I soften my knees out of a locked position my thighs shake taking the weight of my body. They don't seem to give out on me and do actually hold me up but they shake and become uncomfortable/achey under the pressure? When I walk it is like there is no power in my legs??

All of this impacts on the Typical MG symptoms and makes my facial weakness worse. Since my last flare up I struggle with losing my voice the more I talk also.

Another point that I am struggling with is that Mestinon was a miracle for me for 3-4months but now there are times when it works and times where I'm not sure if it makes me worse!! I have gone down from 90mg to 60mg 4-5 times per day and while the dose works it helps my facial weakness but when it wears off I sometimes feel worse than before?! I don't know, I am just confused at the moment as to what to do for the best?!

I am frustrated and confused - I had just started to feel like I was starting to actually do a little more after my flare up and doing a little more, I was back at work 2 mornings a week and hoping to make it 3 mornings thinking I would soon be back to my 4 mornings a week (which I am meant to work!) I know this thing has its flare ups and I thought I was managing well but now I see that is probably because I've been doing very little! I feel torn - I want to get back to work and was trying to prioritise my energy for that....but then I have 2 young daughters who I am barely able to take anywhere/do anything with, and my boyfriend and I haven't had a night out in over a year...and I haven't seen my friends for longer than that!! I feel guilty wherever I turn and the realisation is hitting that mestinon isn't the miracle it was at the start and maybe I need to either write to the Neuro and plead my case...or go to my GP and see what they suggest...or push for another Neuro and get back on the merry-go-round all over again! UGH!

Sorry to rant and waffle on but I really am left wondering what is going on and what I should do! I feel like I am left trying to work it all out for myself with no real support from the medical profession!

Thanks everyone x