Well for those of you who remember me (I joined neurotalk in 2008) I was diagnosed as having seronegative MG in 2007 and then that diagnosis was removed in 2009/10.

In 2011 I was diagnosed with Postural Orthostatic Tachycardia Syndrome (PoTs) and Ehlers Danlos Syndrome (EDS). Ptosis only seemed to bother me occasionally and my doctors put it down to low blood pressure or EDS.

In April this year I felt the best I had in years. I started to increase my activity levels after years of not doing very much. Within 4 days I was having to have a nap in the afternoons. I noticed when I was trying to walk I couldn't move my legs. It was like my foot was stuck to the floor. I had to shuffle rather than walk. I noticed I was having more problems chewing and swallowing. Then Ptosis came back. Initially for just a day at a time. Now however its back, I have had it for 9 days straight.

Last week I saw my hospital consultant (the one I see for PoTS and EDS) it was the first time hes ever seen me with ptosis and pupil drift. I took a freezer block with me to the appointment and performed an ice pack test in front of him. He said "you do know that's a positive indicator for MG". I laughed and said "seen it, done it and got the t- shirt." He told me "unofficially I think you have MG but I am not a neurologist so I can't diagnose you"

So after a 8 / 9 year break of trying to get the drs to listen to me about my muscle weakness and Ptosis, I am back on the hamster wheel of attempting to get diagnosed. You can see photos of my ptosis on my blog - the post is called Ptosis again http://http://wp.me/p4zBAs-mU

So as I thought I am back where I started I'd pop in and say hello!

Rach

Welcome back. Sorry your symptoms returned.
Mike

It is nice to see some of the old gang are still here!

Yes the symptoms came back with a bang the minute I increased my physical activity. My PoTs consultant has asked my gp (primary care) to write me a prescription for mestinon today. I actually threw all my mestinon out a few months ago as it was two years out of date.

In the meantime I have been taking Huperzine A which is like a natural mestinon. Up until a few days ago this was working and resolving the ptosis but its stopped working now. 9 days of ptosis and I am going nuts yet I lived with it for 9 months solid back in 2007.

Thanks for the welcome back Mike! Its "sort" of nice to be back here.

Rach x

Mine finally hit me with a bang. Had skin cancer removal. This one was deeper than the others. Ended up oin hosp for 8 days. Still trying to recover. Having to use a walker. Dr's told me to have future removals via radiation. My dermetologist never mentioned that.
Mike

Mike,

I am so sorry to hear that.

I can't believe the dermatologist didn't inform you properly about future removals. That's just awful.

I really hope you start to pick up soon. I hope the walker helps, I have to use a wheelchair outside the house, crutches and a cane inside the house just depends how rough I am on any given day. It took me a long time to get my head around it. However I know what happens if I push myself and its not worth it.

I am just so sorry Mike

Rach x

To top it off on my last visit I asked him and his nurse if there was another method for removal. They both danced around the question. He is supposed to be the best in the state.
Mike

Hi Rach! Remember me ? I have had a return of symptoms too and was thinking of the old gang today and logged on and look what I found ! Sorry to hear you have had it all return too.

Yes I remember you! Funny that there are still a few of us about.

I am sorry that you have returned as well due to the return of symptoms. I hope we both get treated better this time around.

Rach x