Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

1,709 Members

7,414 Posts

0 Online

CarlyMichelle 06/05/2013

I have autonomic heartrate dysfunction as well as problems with temperature control, my gut motility, etc...
Just wondering if it's common for folks with MG to have autonomic
dysfunction too?

Carly

krbunn 06/05/2013

I do. Mine is more connected to small fiber neuropathy. Temperature control, varied pulse, gastroparesis. --Kerry

snowbeltfolkie 06/05/2013

I have problems with temperature control (I need a wardrobe assistant, what with all the layers of clothing that I drag around).
I also have a problem with gut motility (gut no-go ability) (i'm a feeding tube fool.)
So many nerve synapses, so many places for things to go wrong.
Some days, I say to myself: it's a wonder anybody's nervous system works at all.
While I'm trying to be a little lighthearted?
More importantly, I am very sorry to hear - that you have to put up with these debilitating conditions.
It's no fun - and I hope you feel better, in the days to come.
- Ross

CarlyMichelle 09/08/2013

Mestinon seems to help with POTS symptoms some of the time at least. :-)

Glad to know I'm not alone.
Some days my POTS is really bad. :-(

Carly

limpnoodle 09/08/2013

I have the autonomic and temperature control problems (hard to figure out what to wear) but I have Lems and autonomic problems are common with that. I also cannot sweat properly. When I get hot and should sweat, it feels like I am being attacked by ants.

angepugin 09/09/2013

I also have autonomic problems. Very labile BP, bouts of tachycardia, temp problems and the gut ones. It's interesting to hear how many of us have this on top of the MG when there isn't supposed to be any association between the two conditions except in LEMS like limpnoodle said. Perhaps like you Kerry we all have some other autoimmune process going on that is responsible for these autonomic problems. So sorry you are battling with this all Carly and really hoping that you get some relief soon. I'm with you Ross, better we laugh than cry hey! Ange

jeanniea 09/09/2013

Yes this just since past January. A year and a half after mg symptoms started.

CarlyMichelle 09/10/2013

I think POTS is just as nasty as MG. :(

Carly

deleted_user 09/11/2013

I've always had POTS with the MG, responded to standard treatment: mestinon and thymectomy. Was told that according to the clinical model it shouldnt be related to MG, but that 10% or so of patients seem to have, especially if they have resp/bulbar involvement. Now I have other autoimmune diseases and take cyclosporine which keeps my pressure up. Can still generate a standing heart rate of 160BPM on a bad day, but almost never faint anymore. Did have one cardiologist say that using mestinon to control my orthostatic tachycardia was the stupidest thing he'd ever heard; I asked how stupid can it be if it works?

Join the Conversation