Yes! I have really weak neck muscles as well. CAn't sit for too long, or I'll feel like my head's dropping or my neck's hurting like crazy. Nowadays, i don't bother supporting with my arms as my arms are weak too. Lol. Sometimes I just lay back in my chair and lean my head back to rest on the back of the chair...

Hey sweetheart! It sounds like you need some sort of boost! I haven't had my "nasal" voice since I started on the pred, but I do sometimes have nasal regurg........

I am so glad to hear you are having your thymectomy, cuz all of your sx's sound pretty serious to me. We all tend to downplay how awful and weak we feel - simply b/c sometimes there are no words to really explain it. All I do know is that you are always in my thougths and prayers. You are one tough cookie! I bet your thymectomy puts you into REMISSION!

Until then, really try and take it EZ - and I do mean EZ. If you are tired, please rest. Holding your chin down to swallow makes all the difference - isn';t it funny what we have all learned from MG?

Hang in there, sweetheart!
Love,
Erin

Hey Erin,

Thank you so much for your kind, empathetic words! I really do appreciate your thoughtfulness!

After having my most recent plasma exchange, my voice is actually back to normal--miraculous! I'm ecstatic! But i have a bad reaction to my last treatment...My calcium got really low and, it's a long story how it happened, but my right hand and face went completely numb--I lost all feeling, and this was after I'd left the hospital! I was alone waiting for the bus and raced back to the hospital. They stabalized me, but it was scary, nonetheless!

I'm having my thymothymectomy in two days (tuesday), and the main thing I'm worried about is the tumour being malignant...Boy, I hope it's not! I have come to realize how bad my health has declined lately...When I saw my anethesiologist, he said that a vein on the right side of my neck is swollen, so the tumour's probably wrapped around some veins. He also noted that my BP is pretty different on each arm, probably explaining my chronically swollen fingers on my right hand...But oddly, I feel relieved that he noted these things, because they've been bothering my for years! I have some hope that they'll be taken care of once the evil tumour is removed!

One of the things that makes this experience especially terrible is that I don't have a lot of family support. Some family members downplay my situation and don't seem to understand how much I'm suffering, because they don't want to or don't care to. But everyone has their trials and tribulations. This one is mine. Hopefully, when I get better, that wont have to be something that makes me feel lonely or sad anymore, and I'll have the strength to stand on my own feet again, emotionally and physically.

Thanks for looking out for me, Erin! You are a very special person and hopefully, we all will get stronger and stay stronger!

Take care!

Nicky

Hey Nicky,

I know you are going to come through the surgery just fine. I will be keeping you in my thoughts & prayers. While we can't be with you on Tuesday, we will all be with you in spirit. You take good care of yourself and we'll all be waiting to hear from you when you're feeling up to checking in. I'll be keeping good thoughts.

Big Hugs,
Pat

Hi Nicky!
I'm sure all of your neurotalk family will be with you with their positive thoughts and energy for you on Tuesday.

Sue

i hope your surgery goes well or went well. it's tough enough to be sick but without family and friends-i don't think strong to go it alone. BUT REMEMBER WE ARE ALL PRAYING FOR YOUR HEALTH TO IMPROVE.WE ARE THERE IN SPIRIT FOR YOU!!!!!

Good luck on Tue. Nicky, I'll be thinking of you. Hang on to the fact that most tumors on the thymus are benign. Mine was.

Hi sweetheart! Just checking in on you to see how you are........please take it ez after surgery...you will recover faster and feel so much better! I was sooooooo dumb after my surgery - I hosted a party for my niece 9 days after my surgery - as well as taking care of my family......what an idiot!

I'm going to be doing some serious praying for you! You are going to be just fine! After your surgery, you're going to feel like a CHAMP!

Love,
Erin





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