Hi Everyone,

Im just writting this as I am totally and completely confused! (that makes a changeLOL)

I got out of the hospital after 24 hours on IV antibiotics as I haven't been able to shift the Kidney infection Ive had since 8th August. (just my 6th trip this year)

When I usually go into hospital I say Im "query myasthenia gravis" to which the response is, "no your tests are negative". Im usually arguing with a member of the neurology team, or A&E who have seen far too much of me this year!

So I decided to not tell them this, on this occasion. I said "I have a neurological disorder, which is yet to be named". So imagine my surprise that when the surgical team did the ward round they said "This young lady is 35 and has myasthenia gravis, look at the unilateral ptosis, which she says hasn't resolved whilst she has had this kidney infection, despite taking medication" You could have knocked me down with a feather!

After 12 hours of antibiotics the ptosis resolved, so when they did the ward round the next day. "this young lady has myasthenia gravis, those of you who saw her yesterday would have seen the marked ptosis, although its still slightly there, we can see shes feeling better" To which I answered "your right Ive had ptosis since 8th August when this infection started and I no longer have any pain."

My confusion is based on- why do the surgical team call it myasthenia gravis, when the neurology team call it cortical plasticity. I spoke to one of the Drs and said I have got the diagnosis Cortical plasticity, to which he laughed and said thatas a bull **** diagnosis, have you tried the london hospital of neurology. I said yes but they wont see me without a referral.

This isn't the first time other Drs in the hospital have queried my consultants diagnosis. One consultant said to me "hasn't he made his mind up yet?", another said "what more evidence does he need, you respond to mestinon". These people have all seen me take the mestinon and watch my ptosis resolve. I have asked them to put it in my notes, but no one wants to be the one that contradicts my neuro.

This is crazy! As Im sure you will agree.

I also feel heaps better, my neighbour has just seen me and said Ive got colour in my cheeks for the first time since this kidney infection started.

I do feel great, but Im cautious as I always feel fantastic after 24hrs of bed rest!

Love
a very confused.......
Rach x