I have a question about MG.. Since this last dose of IVIG (aseptic meningitis again - we increased the rate =opps!) I have been feeling REALLY run down again, every muscle trembling and shakey and just weak.. I have nasal sounding voice at times and my eyelids defintely sag (however its the upper part of the lid- the part below the eyebrow- I have these wierd folds on my eyelids now.. it's really strange looking and it was one of my first symptoms, though it is way worse now)

Anyhow.. my whole body feels heavy, but my eyelids feel REALLY heavy and fatigued... almost uncomfortably so... closing them doesn't necessarily resolve that either since it takes effort to completely close them too.. anyhow.. I was curious if that coudl be a MG type symptom? I have since started suffering constant nauseating double vision too!
Thanks again for any help!

Yep, those are symptoms. You probably should let your neuro know that the IVIG wasn't enough. Also, don't raise the infusion rate!

This is the point where you go to the hospital. If you can't move on your own, you need to dial 911.

Have you been overdoing it or is this just coming on without activity?

Are you sure that Guillain-Barre has been ruled out? Have they even mentioned trying plasmapheresis?

Just go in. This is nothing to mess with!!! I hope you'll be okay.

Annie

thank yall so much for yalls reply!!! I am feeling better as far as the generalized muscle weakness goes.. it's strange how it waxes and wanes.. we had been out of town last weekend and not slept much and pushed ourselves too much I think..

I am taking it as easy as I can with two kids (a 2 year old and now 1 year old).. and a full time job and taking care of a house/cooking etc!!! I REALLY try to rest more.. but with me being the bread winner and mom, it's not easy!

As far as the guilliane barre thing, that is defintely what the all think it may have been ... a bit of a slower onset though- I think it took about 6-8 weeks to hit my whole entire body. However, my reflexes weren't really dulled down (some said they were, others said they were brisk, others say normal - I have always had brisk reflexes my entire life however). My LP had upper limit of normal protein, and the 2nd LP had elevated, however I had meningitis then from the IVIG.. so that can mess up the results. They have diagnosed me with CIDP, however it is atypical, and they as well as myself are still keeping our minds open to other diagnoses

I have weakness in every single muscle.. but my proximal muscles are worse, especially my hip extensors (this is GREATLY improved by the IVIG when I don't get meningitis)! I have days where every muscle is so weak, it is hard to even go to the bathroom- my core muscles are so weak.. my face droops, and when my IVIG wears off my right eyelid droops a lot, slurred speech and swallowing issues.. and of course double vision too! Sooo who knows!
It does look like I am going to get to go see the neuro opthamologist this week though, so maybe they can give me some insight! I had no idea how rare neuro opthamologists were- there are not many at all!!!