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

Hi Lottie, and thanks for your reply! Yeah, I think the news is good although it still sucks Now, if I could find a PM dr who is as good as this guy is...

You are correct, my husband is a gem and I am so fortunate to have him. I do wish there was more support around me though. He never acts like he is tired of hearing me complain or anything like that, but I think it has to wear on him sometimes. He tells me often that he wishes he could do something more to help me. Most of my family is great, but none of them live around me and they are all busy with their families, etc. Also, most of them really do not get it (shocker right?). I really do not have many friends, especially near by.

I appreciate the support I find here, that is for sure! I know I haven't posted much lately, but I have been lurking. It has really been tough with all going on lately...so overwhelmed!

Thanks again
Nanc

I understand, Nanc. My husband is a gem too. But, I sense sometimes that because he feels he can not make it go away, he feels helpless and sad. My teen daughter is wonderful too, but I try to keep her life as normal as I can.

Other than that, I have no family anymore. And, when I had to stop working I lost all my workplace "friends". Gosh, that's been hard for me.

Anyway, I get it. Keep talking with us here. I'm worried about you feeling like this is all just too much.

~Lottie

Oh Nanc I am SO in touch with that statement right now hon. I'm so sorry... Somehow, someway.. it will get better. It will surely ease. Man I'm hanging on to that too sister.

I understand what you are saying about your husband too Lottie. I think it really bothers mine that he can't really do anything to help my pain. My husband was born with cerebral palsy, which affected his right side. His right arm is drawn up so he can't really use it and he can't use his right hand either. So, with that he can't really cook, I mean he can heat up stuff but preparing meals is near impossible for him. I have to prepare meals so I do easy as possible stuff. I have dietary restrictions, which adds to the difficulty, because of gluten intolerance, pork, fish and shellfish allergies and a special diet for IC. Not so easy for him to pick something up on the way home from work. Very frustrating!

I thought I had a few work friends, but when I stopped working Dec 28, 2012 not a single one of them gave a crap. I was with this company 9 1/2 years and when others had minor things happen, everyone was there for them. When I left out on disability - nothing! Well, I got a card that some of them signed, but that is it. My supervisor had a hysterectomy and they collected money for meals and she had MANY visitors. Her husband does most of the cooking for them and her mother was there too. It was like that with others too and it just hurt my feelings that after all I gave to that company, they didn't care one bit about me. I lost other "friends" too. At least I do still have family and I will see some of them this weekend for my niece's bridal shower. But, I hate to call crying to them when they all have their own families and issues to deal with.

I appreciate your concern and for listening to me I have had moments like this, but this time it seems a little worse and a little more overwhelming. I am trying hard to take my mind out of the dark place it is in. It is all too much for one person to deal with. I just wish there was at least something I could take to help my pain, even just a little bit.

Sorry, I am rambling on here. Thanks again for listening!!
Nanc

Hey Vrae! Thanks and I hate that you are feeling this too!! I have to hold on to that statement as well "somehow, someway it will get better". My husband reminded me last night that I have been at this point several times before, where the pain got so bad, then it eased up and went back to a more tolerable level. Now, I am just waiting for that!!! I hope you get there soon too!!