Quote:
Originally Posted by Nanc
Hi guys! Just wanted to update you on this myasthenia gravis stuff. I went a few days ago to a new neuro-ophthalmologist for a second opinion. He was VERY thorough! He thinks that my eye/vision issues are not MG, but actually coming from RSD, which is in that side of my face. I am thankful and hoping that he is correct! He gave me options - 1) try the treatment medication that they normally use for MG to see if it helps the symptoms I am having; 2) have the EMG & SFEMG redone...no thanks! 3) wait and see if it progresses, because if it is MG, it will make itself known. I have been having trouble with choking and swallowing so I am having a scope down my throat this Friday. Been having some bleeding issues also so I am having a colonoscopy Friday (sorry - TMI). Decided not to take those MG meds because of the other issues going on. Dr was pretty sure it is RSD.
I am having a really hard time right now. My RSD is flared so much as is my interstitial cystitis (bladder pain). Today is one of those days that I wonder how much more I can actually take.
Thanks for listening 
Nanc |
Hi Nanc, first let me send you a big hug
I've been wondering how you are coming along, thanks for the update. GOSH GIRL! This is a lot. I'm not sure if this is good news, but I think its better to have the devil that you know (CRPS) than a new devil (MG) to cope with. I am glad to know you found a doc who gave you a thorough assessment and a well-reasoned set of options. That's worth a ton right there.
Are you getting support from family/ friends? I know you've told us in the past that your husband is a gem, but we need to lean on someone else too so we don't burn out our spouse. Well, we are here for you and hope it helps some.
Warm wishes,
Lottie