Hi Abby,
Hmmmmmmmm, I would still suggest that you consider steroids, but perhaps in an "untraditional" form. A few years ago, I tried some fairly low dose IV solumedrol (200 mg or less). I used it at the same time as IVIG and it kept me from having to increase my pred dosage, and the side effects are much less and it worked very well. You could also re-explore IVIG, perhaps using a different brand (Gamunex is considered the best by most people.)
Please refer to the Osserman scale below. It can help you truly look at and consider the severity of your symptoms. Remember that you don't have to be "severe" to warrant treatment.
:
Class I MG is characterized by the following:
Any ocular muscle weakness
May have weakness of eye closure
All other muscle strength is normal
Class II MG is characterized by the following:
Mild weakness affecting other than ocular muscles
May also have ocular muscle weakness of any severity
Class IIa MG is characterized by the following:
Predominantly affecting limb, axial muscles, or both
May also have lesser involvement of oropharyngeal muscles
Class IIb MG is characterized by the following:
Predominantly affecting oropharyngeal, respiratory muscles, or both
May also have lesser or equal involvement of limb, axial muscles, or both
Class III MG is characterized by the following:
Moderate weakness affecting other than ocular muscles
May also have ocular muscle weakness of any severity
Class IIIa MG is characterized by the following:
Predominantly affecting limb, axial muscles, or both
May also have lesser involvement of oropharyngeal muscles
Class IIIb MG is characterized by the following:
Predominantly affecting oropharyngeal, respiratory muscles, or both
May also have lesser or equal involvement of limb, axial muscles, or both
Class IV MG is characterized by the following:
Severe weakness affecting other than ocular muscles
May also have ocular muscle weakness of any severity
Class IVa MG is characterized by the following:
Predominantly affecting limb, axial muscles, or both
May also have lesser involvement of oropharyngeal muscles
Class IVb MG is characterized by the following:
Predominantly affecting oropharyngeal, respiratory muscles, or both
May also have lesser or equal involvement of limb, axial muscles, or both
Class V MG is characterized by the following:
Defined by intubation, with or without mechanical ventilation, except when used during routine postoperative management
Use of a feeding tube without intubation places the patient in class IVb
Hope this helps a bit. I was looking for a better "functional scale" but this was the best I could find!