Thanks for your post.

It really is a struggle I think to get any Dr to listen to you even if you have a diagnosis. I am going to tell you a true story but change some names!

I have a friend lets call her Suzie shes training to be a Dr and she got sick the same year as me, same symptoms as me facial weakness and ptosis. As she is a Uni she sees the campus doc who refers her to neuro ophthalmologist. He does an MRI and says she has a really rare type of brain tumor a facial nerve neuroma. It takes her two years to convince her normal neurologist of this diagnosis. Because the neurologist said she hadn't seen it in 27 years of practice - it couldn't be. Fast forward a few years Suzie has had part of her skull removed to allow tumor to grow so it doesn't interfere with her studies. She develops vertigo and is rushed to our local hospital.

The neurology team (same ones I have had to deal with) tell her she doesn't have a tumor it has been removed (it hasn't only part of her skull). She spends 4 days telling them she has a facial nerve neuroma and they don't believe her! She then rings her consultant in another part of the UK to deal with the consultants here.

When she asked the neurologist why he refused to believe her he told her "Patients lie". Sort of sums up the problem with neurologists doesn't it. If they haven't come across it, it doesn't exist!

The florinef could be causing me headaches or it could be my weak neck. So I am hanging on in there. On the florinef you have to salt load - I can't abide salt but I am trying very hard! I am still having to drink copious amounts of fluid. I get through 1.5-3 litres overnight, I have horrific night sweats which leave everything soaked, I get so dehydrated I drink loads.

During the day I struggle I drink probably about a litre of tea, thank god a new study has shown it does hydrate you! Then about a litre to 2 litres of squash during the day with salt added to it.

I have noticed my eyes are very puffy in the mornings now so I look like a frog! My wrinkled hands and fingers (look like I have been in the bath for a very long time) are also less wrinkled. My blood pressure was normal this evening for the first time in ages. Problem is I still feel crappy. I don't know how much longer I can stand this headache. Its just a low grumbly one but its annoying. I can now lean forward to put on socks and shoes without feeling dizzy! But still having problems sitting up and standing. My GP advised me that its not a miracle cure but any improvement at all was worth striving for.

A good web site is http://forums.dinet.org/ this is excellent for people with autonomic dysfunction particularly POTS. Without the help I have received from the people on that site I would have not pushed for the diagnosis or known anything about the disorder. Look up the post good article on pots its a new post and lists all the symptoms - some a lot of us on Dinet hadn't even realized were POTS.

Feel free to message me. I don't come on here as often as before but I do check at least once a week to see whats going on.

Good luck

Rach