[rach73]

Hello all,

Some of you may remember me from 2007-2008? I still read the forum posts and occasionally chime in.

In 2007 I was diagnosed with MG then in 2008 that diagnosis was questioned and then in 2009 was completely removed and my then neurologist suggested to all the drs I had contact with that I had somitization disorder.

After a lengthy battle I was diagnosed with Ehlers danlos syndrome type 3 (hypermobility) and autonomic nervous system dysfunction.

However I am now possibly back on the road to being diagnosed with MG.

In May I noticed my eyes were acting weird. My peripheral vision would slide down and then pop up like a roller blind. When I saw my consultant I mentioned it to him and he did a quick eye exam and discovered I couldn't track moving objects without having nystagmus (jerky eye movements). On 10th June I saw my gp and he did a more extensive eye exam and my nystagmus was even worse and was causing me to blink wildly. Since 10th June I have had my ptosis return full on. I get about 30 minutes to a couple of hours without it each day.

I have taken 30mg of mestinon and as usual the ptosis is resolved and the nystagmus settles a bit. However it only lasts about 2 hours and due to various medical problems I really can't take mestinon due to the problems it causes me.

Earlier this year I had swallowing issues - couldn't swallow or I was choking. So much so I had to see a speech therapist and now have a thickening agent to add to liquids to stop me choking. This was blamed on EDS as its known to cause these issues. However although EDS can cause double vision - which I have badly, it doesn't cause nystagmus or ptosis.

I must also add my ptosis resolves if I apply ice to it.

I see the neuro opthalmologist on the 16th of this month and I'm guessing I'm going to be back at the neuro dept shortly after that.

So I'm back and maybe I will finally get a diagnosis as I obviously have something neurological going on.

I apologise for any mistakes in this thread, my eye sight is poor and I'm battling the auto correct as well.

Thanks for listening

Rach x