[rach73]

Hi,

I just need a few quick questions answered. I used to be on the forum quite a bit but drifted away due to having the MG diagnosis removed.

I started florinef one week ago and the MG type symptoms that haven't been a real problem for about twelve months now have raised their ugly head. I am having full on ptosis, bilateral and unilateral, choking on liquids, neck weakness and breathing problems. I am back taking mestinon even though I have problems with it. The mestinon resolves all my issues. But I am having to take between 60mg -120mg before it makes any difference. I don't have any side effects other than stomach cramps.

For those of you who have been on steroid treatment and had an exacerbation of symptoms how quickly did these get back under control?

I spoke to my consultant today and he doesn't want me to increase the florinef just stick at 100 micro grams. He doesn't believe that the steroids are making my MG like symptoms worse - but hes a geriatric specialist not a neurologist and his knowledge of MG would fit on the back of a postage stamp.

I don't have a neurologist as neurology say theres nothing wrong with me. Due to the UK system I have no easy access to neurology unless I get so ill I am admitted to hospital. Believe me I don't want that so I am happy to treat with mestinon.

So thats my latest dilemma!

Rach